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About US Federal Policies & Human Biotechnology


Federal regulations on most human biotechnologies are inadequate, falling far short of the kind of comprehensive approach that is needed. This situation is due to the unique social and policy challenges posed by human biotechnologies, to the anti-regulatory environment of recent years, and to the divisive politics and religious beliefs that accompany issues involving human embryos.

One regulatory failure is Congress's inability to pass a law prohibiting human reproductive cloning. Nine in ten Americans oppose it, as does every member of Congress and nearly every reputable scientist. Bills that would prohibit reproductive cloning have been introduced several times, but have failed because of disagreements over research cloning.

Another failure is assisted reproduction's scant regulation and oversight. Despite numerous reported abuses and billions of dollars in revenues, federal oversight remains limited to collecting data on success rates.

Medical gene transfer (also called gene therapy) is slightly different. The Food and Drug Administration (FDA) and the National Institutes of Health (NIH) are supposed to oversee each clinical trial. But researchers have often ignored this requirement, as revealed most dramatically after the death of 18-year-old Jesse Gelsinger in a gene transfer experiment.

The most publicized aspect of federal biotechnology policy have been the limitation on federal funding of embryonic stem cell research that was imposed by President Bush in 2001 and removed by President Obama in 2009.



When a Study Cast Doubt on a Heart Pill, the Drug Company Turned to Tom Priceby Robert FaturechiProPublicaJanuary 19th, 2017After hearing from a company whose CEO was a campaign contributor, a congressional aide to Donald Trump’s HHS nominee repeatedly pushed a federal health agency to remove a critical drug study from its website.
CGS Board Member Leads Redress Call for California Survivors of Eugenic Sterilization by Marcy DarnovskyJanuary 16th, 2017Scholars estimate that more than 800 people alive today were sterilized in California state institutions, and call on the state to consider compensation and redress.
Fertility Futility: Procedures Claimed to Boost IVF Success Lack Supporting Evidenceby Sandy OngNewsweekJanuary 12th, 2017Of nearly 30 expensive clinic add-ons reviewed by researchers, only one drew some evidence of boosting the chances of having a baby.
The Promise and Peril of Emerging Reproductive Technologiesby Ekaterina PeshevaHarvard Medical SchoolJanuary 11th, 2017IVG, thus far successful only in mice, allows scientists to create embryos in a lab by reprogramming any type of adult cell to become a sperm or egg cell.
Obama vs. Trump: 5 ways they clash — or don’t — on health and scienceby Dylan ScottSTATJanuary 9th, 2017While Trump might play some wild cards in medicine, science, and public health, there may be some surprising continuity with President Obama’s administration.
How Gene Editing Could Ruin Human Evolution[cites CGS's Marcy Darnovsky]by Jim KozubekTimeJanuary 9th, 2017There are no superior genes. Genes have a long and layered history, and they often have three or four unrelated functions, which balance against each other under selection.
2016 Fear vs Hope: Gene Editing— Terrible turning point?by Pete ShanksDeccan ChronicleJanuary 1st, 2017As the tools for gene editing rapidly advance, we approach our best chance to prevent the rise of a modern, uncontrolled and dangerously ill-considered techno-eugenics.
Unexpected Risks Found In Replacing DNA To Prevent Inherited Disordersby Jill NeimarkNPRJanuary 1st, 2017Scientists are increasingly concerned that "3-person IVF" techniques may allow flawed mitochondria to resurface and threaten a child's health.
China’s $9 billion effort to beat the U.S. in genetic testing[cites CGS's Marcy Darnovsky]by Ylan Q. MuiWashington PostDecember 30th, 2016Chinese investors — both private and government-supported — are backing American start-ups and funding promising new companies at home.
Will the Alt-Right Promote a New Kind of Racist Genetics?by Sarah ZhangThe AtlanticDecember 29th, 2016The genomic revolution has led to easy sequencing and cheap "ancestry" tests. White nationalists are paying attention.
UC Davis professor wants FDA to create firm guidelines for stem-cell treatments, put clinics on noticeby Claudia BuckSacramento BeeDecember 24th, 2016Now is the time for the U.S. Food and Drug Administration to finalize guidelines and send notices to clinics that are offering untested treatments.
Why tech offers better fertility benefits than other industries[cites CGS's Marcy Darnovsky]by Alison DeNiscoTech RepublicDecember 21st, 2016The benefits are part of the current talent war for engineers and other professionals. Tech workers should be cautious about using the procedures.
Obama’s Outgoing Science Advisor Will Keep Watch in 2017by Dave LevitanWIREDDecember 20th, 2016There is no denying the scientific know-how of the outgoing administration. What comes next has scientists worried.
Bioterrorism And Gene Editing: Can Crispr Tool Be Used As Biological Weapon In War?by Himanshu GoenkaIB TimesDecember 14th, 2016Given its broad distribution, low cost, and accelerated pace of development, deliberate or unintentional misuse of gene editing might have far-reaching economic and national security implications.
We Launched a New Website! Surrogacy360by Kiki Zeldes, Biopolitical Times guest contributorDecember 14th, 2016Surrogacy360 provides accurate information and resources, free of commercial interest, for people considering surrogacy outside the United States.
Biopolitical News of 2016by Pete Shanks, Leah Lowthorp & Marcy DarnovskyBiopolitical TimesDecember 13th, 2016We highlight 2016’s trends in and top news stories about human biotech developments.
Slippery Slopes and Biological Curve Balls: Updates on 3-person IVFby Leah LowthorpBiopolitical TimesDecember 13th, 2016There have been several recent setbacks and troubling developments in 3-person IVF technology and applications.
With 21st Century Cures Act, the Future of Regenerative Medicine Is “Inject and See”by Megan MoltenWiredDecember 13th, 2016Critics say it’s deregulation in sheep’s clothing — and worry that both science and patients will suffer.
Trump is considering a radical to lead FDA. That’s dangerous for public healthby Ed SilvermanSTATDecember 12th, 2016Imagine being prescribed a medicine when no one has a clue if it will work — because the government never required it to be tested for effectiveness.
Historians seek reparations for Californians forcibly sterilizedby Ronnie CohenReuters HealthDecember 12th, 2016Alexandra Stern and colleagues investigated over 20,000 documents from the state's eugenics program. Many victims are alive today; California, like other states, should offer them financial compensation.
Exclusive: Mexico clinic plans 20 ‘three-parent’ babies in 2017by Michael Le PageNew ScientistDecember 9th, 2016Mexico has no specific regulations governing mitochondrial replacement or assisted reproduction.
Trump, Science and Social Justiceby Pete ShanksDecember 8th, 2016President-elect Trump's appointments, so far, are frightening to anyone who cares about science, or social, economic and environmental justice.
CRISPR Heavyweights Battle in U.S. Patent Courtby Sara ReardonNatureDecember 7th, 2016UC Berkeley and the Broad Institute are vying for lucrative rights to the gene-editing system. The December 6 hearing was the first and only time the two sides will speak to the judges before the ruling.
Winners and losers of the 21st Century Cures Actby Sheila KaplanSTATDecember 5th, 2016Despite overwhelming bipartisan support, Elizabeth Warren says the bill was "hijacked" by Big Pharma to water down safety requirements for new drugs and devices.
New ​Chair of ​our ​Diversity ​and​ Health Disparities​ Research Cluster​ on Colorblindness and the Need for a New Biopoliticsby Sara GrossmanHaas Institute, UC BerkeleyDecember 2nd, 2016In a faculty profile interview, CGS Fellow Osagie Obasogie discusses colorblindness and biopolitics.
Deaths in CAR-T Immune-Therapy Trials Haunt Promising New Cancer Treatmentby Emily MullinMIT Technology ReviewDecember 1st, 2016Companies are racing to develop a new type of cancer therapy, but scientists are still assessing its safety.
How Will Trump Use Science to Further His Political Agenda?by Sarah ZhangThe AtlanticDecember 1st, 2016We have a president-elect who appears to believe in his genetic superiority, with a chief strategist who has been reported to believe the same.
Human Gene Editing: A Timeline of CRISPR Cover StoriesWith recent gene editing tools, a number of high-profile media are featuring CRISPR on their covers and front pages. We gather highlights since early 2015, along with opinion polls, TV shows, and editorial board statements.
Review of Blame: A Novelby Abby Lippman, Biopolitical Times guest contributorNovember 28th, 2016Blame is especially important for those unfamiliar with the range of ethical, social, legal, and political issues raised by applications of what is learned in a lab. While a work of fiction, it is definitely not science-fiction
Obama’s Science Advisors Are Worried About Future CRISPR Terrorismby Daniel OberhausVICE MotherboardNovember 21st, 2016While the form biological threats will take in the future is uncertain, what is certain is that the United States is not at all prepared to deal with them.
Why the Deaf Community Fears President Trumpby Sara NovicVICENovember 18th, 2016According to his biographer, Trump subscribes to a racehorse theory of human development and the superiority of certain genes — an echo of eugenics.
The Sudden, Inevitable Rewiring of the American Leftby Andrew BurmonInverseNovember 18th, 2016It's not clear which direction the Trump administration will be pushed by conservative evangelicals like Mike Pence and technophile wildcards like Peter Thiel.
Who Will Advise Trump on Science?by Ed YongThe AtlanticNovember 18th, 2016For 40 years, the Office of Science & Technology Policy has closely counseled the president, but its role in the new administration is unclear.
Abortion-By-Mail Study Outrages Opponentsby Phil GalewitzKQED California HealthlineNovember 16th, 2016A pilot study of telemedicine-based medical abortion demonstrates a welcome new option for women. Opponents of abortion find the concept deeply disturbing.
Seeding Doubt: How Self-Appointed Guardians of “Sound Science” Tip the Scales Toward Industryby Liza GrossThe InterceptNovember 15th, 2016Sense About Science has downplayed concerns about industry-funded research and promoted science that favors private interests over public health.
Stem Cell Clinics Promise Miracle Cures, but at What Cost to Patients?by Philip PerryBig ThinkNovember 13th, 2016Taking advantage of a regulatory loophole, hundreds of clinics with virtually no oversight are offering stem cell therapies which are virtually untested, and make unsubstantiated claims about helping patients overcome disease.
A Call to Protect the Health of Women Who Donate Their Eggsby Judy Norsigian and Dr. Timothy R.B. JohnsonThe Women’s Health ActivistNovember 12th, 2016The egg market is growing, yet long-term safety data does not exist to enable donors to make informed choices about selling their eggs.
Stem Cell Researchers Anxious About Trump Presidencyby Gillian MohneyABC NewsNovember 11th, 2016Mike Pence opposes federal funding for embryonic stem cell research. But reintroducing a funding ban "would be like putting a genie back in the bottle."
San Diego Scientists Help Develop New Twist On In Vitro Fertilizationby David WagnerKPBSNovember 10th, 2016The patent holder for a related "3-person IVF" technique reports new work with "polar body genome transfer." Some experts say none of these approaches have been proven safe.
I’m a disabled American. Trump’s policies will be a disaster for people like me.by Ari Ne'emanVoxNovember 9th, 2016The anticipated loss of support infrastructure that is essential to living with a disability may lead to greater solidarity from other progressive groups.
Why We Need to Rethink Ethnicity-Based Genetic Testingby Shivani NazarethUS News & World ReportNovember 7th, 2016The problem with genetic tests that assume people exist in neat race and ethnicity categories is that it simply is not an accurate reflection of their ancestry.
Where Traditional DNA Testing Fails, Algorithms Take Overby Lauren KirchnerProPublicaNovember 4th, 2016Various "probabilistic genotyping" programs undermine due process as defense attorneys, judges, and jurors can't access their proprietary inner workings.
America’s ambivalence about race is seeping into scienceby Taunya EnglishThe Pulse, NewsworksNovember 4th, 2016"Race has been used to oppress people, ... to kill people. Does science really want to be using a concept that is so historically loaded?"
13 Urgent Science and Health Issues the Candidates Have Not Been Talking Aboutby C.U.N.Y. Graduate School of JournalismScientific AmericanNovember 3rd, 2016The prospect of genetically enhanced humans is looming, but has remained unaddressed during this election season.
Genetic test costs taxpayers $500 million a year, with little to show for itby Casey RossSTAT NewsNovember 2nd, 2016A new study shows that genetic testing can waste half a billion dollars a year, and lead to unclear results, anxiety, and more testing.
Genetics startup Genos wants to pay you for your DNA databy Sarah BuhrTech CrunchNovember 1st, 2016Company plans to pay participants for full genome sequencing, starting with exomes, to create a disease variant map.
Genetic testing fumbles, revealing 'dark side' of precision medicineby Sharon BegleySTATOctober 31st, 2016Inconsistency in DNA interpretation and in the algorithms used among databases, unregulated by the FDA, contributed to a fatal outcome for a 5-year-old boy.
Doubts About the Promised Bounty of Genetically Modified Cropsby Danny HakimThe New York TimesOctober 29th, 2016Genetic modification in the US and Canada has not accelerated increases in crop yields or led to overall reduction in pesticide use.
The Ethics of Hunting Down 'Patient Zero'by Donald G. McNeil, Jr.The New York TimesOctober 29th, 2016The debunking of a myth raises a moral question about a regular feature of journalism: Is it right to hunt down the first case in any outbreak?
Are Altered Mosquitoes a Public Health Project, or a Business?by Antonio RegaladoMIT Technology ReviewOctober 27th, 2016The fight against dengue and Zika in Latin America is turning into a contest between mosquito-altering technologies, and between profits and public health.
18 Years Later: First Update on Children Born Using 3-person IVF Precursorby Leah LowthorpBiopolitical TimesOctober 27th, 2016Citing a recent study, the media is celebrating "proof" that there is little danger in 3-person IVF. The study itself, however, is not at all certain of the reliability of its results.
H.I.V. Arrived in the U.S. Long Before 'Patient Zero'by Donald G. McNeil Jr.New York TimesOctober 26th, 2016Recently uncovered evidence clears the assumed "source" of AIDS epidemic, and provides a window into cultural disease myths.
23andMe Has Abandoned The Genetic Testing Tech Its Competition Is Banking Onby Stephanie M. LeeBuzzFeedOctober 26th, 2016Other companies are starting to sell next-generation sequencing-based tests to the public, but 23andMe has let go the team that had been working on its project.
3-person IVF and Infertility: What Kind of Slippery Slope is This?by Leah LowthorpBiopolitical TimesOctober 26th, 2016To what extent has anticipation of using 3-person IVF for infertility been part of the story from the start? While we can't know for sure, here are some possible connections.
Obama Brought Silicon Valley to Washingtonby Jenna WorthamThe New York TimesOctober 25th, 2016The White House South by South Lawn festival presented the U.S. as a start-up of dreamers and inventors looking to "fix" social problems with tech.
The controversial DNA search that helped nab the 'Grim Sleeper' is winning over skepticsby Marisa GerberLos Angeles TimesOctober 25th, 2016Use of familial DNA to solve crimes is growing in popularity, raising concerns of 4th Amendment unreasonable search and seizure violations.
Mail-Order Tests Check Cells for Signs of Early Agingby Melinda BeckWall Street JournalOctober 24th, 2016Personal genetic testing companies claim telomere length can signal disease risk, but top scientists say it all amounts to high-tech palm reading.
CRISPR gene-editing controversy shows old ideas about East and West still prevailby Calvin Wai-Loon HoEcontimesOctober 24th, 2016Western imaginations tend to fantasize Asian countries as exotic, crude "others," viewing Chinese research as advancing primarily due to an assumed lack of regulation.
The Cash Cow in 'Fertility' Medicineby Pamela M TsigdinosHealthcare in AmericaOctober 23rd, 2016The unregulated fertility industry often fails to disclose: lucrative profits, poor outcomes, emotional burdens, and medical risks.
Just What We Need: Slicker Infertility Marketingby Gina Maranto, Biopolitical Times guest contributorOctober 21st, 2016A serial tech entrepreneur launches a new start-up called Prelude with a hipster-chic website downplaying the many unknowns of egg freezing.
First Spindle Nuclear Transfer Baby Has Low Mutant DNA Loadby Kate JohnsonMedscapeOctober 20th, 2016At the ASRM Scientific Congress, fertility doctors said they would continue using the mitochondrial manipulation procedure.
Surprisingly few new parents enlist in study to have baby's genome sequencedby Jocelyn KaiserScience MagazineOctober 19th, 2016The NIH-funded project, BabySeq, seeks to analyze protein-coding DNA for mutations in 7000 genes associated with childhood diseases.
Crispr’s IPO doesn’t hit its targetby Robert WeismanThe Boston GlobeOctober 19th, 2016CRISPR Therapeutics' public offering raises half that of its rivals Editas & Intellia -- a sign that the market may be pulling back on genome editing stocks.
California stem cell agency approves $30 million to fast-track clinical trialsby David JensenThe Sacramento BeeOctober 19th, 2016Dubbed the new "pitching machine," CIRM's new $30 million effort is designed to accelerate clinical trials of stem cell therapies.
What Stem Cell Researchers Talk About When They Talk About Ethicsby Danielle VentonKQEDOctober 18th, 2016"Engineers who design something expect it to work. But if you put something [designed] into an organism, the chances that something odd will happen are extremely high."
Meet Prelude Fertility, The $200 Million Startup That Wants To Stop The Biological Clock[citing CGS' Marcy Darnovsky]by Miguel HelftForbesOctober 17th, 2016Despite the short and long-term risks of egg retrieval, fertility companies target young people as a new customer base, putting profits ahead of safety.
DNA database could help predict your disease — then get you firedby David LazarusLos Angeles TimesOctober 14th, 2016Precision medicine raises the disturbing prospect of genetic haves and have-nots, and of discrimination based not on race, age or gender but on health.
President signs Senate bill that protects eugenics victimsby Richard CraverWinston-Salem JournalOctober 7th, 2016State restitution payments will not decrease or eliminate federal benefits for people who were forcibly sterilized.
CRISPR Embryos at Karolinska: Controversies Demand Oversightby Elliot HosmanOctober 7th, 2016Ongoing gene editing experiments in human embryos around the world underscore the need to prohibit modifying cells for use in human reproduction.
Collaborative Science on Historically Burdened Concepts: Intelligence, Genetics, Race & Socio-economic Statusby Daphne Martschenko, Biopolitical Times guest contributorOctober 6th, 2016Confusion and discomfort often accompany discussions of concepts with burdened histories. In both the social and biological sciences, we can and must do better to learn and collaborate together.
Uterus Transplants Fail Again: Why Are They So Difficult?by Rachael RettnerLive ScienceOctober 5th, 2016Four uterus transplants using live donors took place in Dallas, a first in the U.S. But three of the uteruses had to be removed due to lack of proper blood flow.
The Promise of Indigenous Epigeneticsby Emma KowalDiscover SocietyOctober 4th, 2016Amid the hype surrounding the biological study of inter-generational trauma, we need to be aware that epigenetics could be used for racist agendas that work against Indigenous health and well-being.
The VA Will Now Pay For Fertility Treatment For Wounded Vetsby Merrit KennedyNPRSeptember 30th, 2016Congress overturns a 1992 law in order to provide benefits to veterans with reproductive injuries looking to build families.
This May Be The Most Horrible Thing That Donald Trump Believesby Marina Fang & JM RiegerThe Huffington PostSeptember 28th, 2016A film pulls together clips of Trump expressing his eugenic views that intelligence and success are genetically inherited, making some groups destined to failure.
Baby Born Using 'Three Parent' Technique, Doctors Say[citing CGS' Marcy Darnovsky]by Maggie FoxNBC NewsSeptember 28th, 2016"This fertility doctor openly acknowledged that he went to Mexico where 'there are no rules' in order to evade ongoing review processes and existing regulations in the US."
Doctors Dig for More Data About Patientsby Melanie EvansWall Street JournalSeptember 25th, 2016In the name of improving treatment, some hospitals are buying their patients' consumer and financial data from third-party brokers.
A Top Journalist is Suing the FDA Over Its Alleged Use of a Banned and Secretive Practice to Manipulate the Newsby Dave MosherBusiness InsiderSeptember 24th, 2016The FDA has imposed "close-hold embargoes," which allow reporters access to newsworthy information only if they agree not to contact outside sources, a keystone of journalistic due diligence.
Are Swedish Designer Babies Coming Soon?by Eric NiilerSeekerSeptember 23rd, 2016"What are the oversight and controls to prevent this technology from being misused and go to a stage that, for now, the scientific community has agreed is a no-go?"
As Kuwait imposes world’s first DNA collection law, attorney tries to fight itby Cyrus FarivarARS TechnicaSeptember 22nd, 2016"Compelling every citizen, resident, and visitor to submit a DNA sample to the government is similar to forcing house searches without a warrant."
Titanic Clash Over CRISPR Patents Turns Uglyby Heidi LedfordNature September 21st, 2016The billion-dollar patent battle over CRISPR-Cas9 gene editing has moved from scientific minutiae to accusations of impropriety.
Stem Cell Advocates and Critics Push Back on FDA Guidelinesby Alexandra OssolaScientific AmericanSeptember 21st, 2016"After these public meetings the FDA may...send a signal that it is indeed going to rein in the dangerous stem cell clinic industry for real."
Patients Turn To San Diego Stem Cell Companies For Costly, Unproven Treatmentsby David WagnerKPBSSeptember 20th, 2016One patient lost hundreds of thousands of dollars pursuing unapproved stem cell treatments, and was left with a painful tumor and significantly decreased mobility.
White House science advisers urge Justice Dept., judges to raise forensic standardsby Spencer S. HsuWashington PostSeptember 20th, 2016A new report cautions that widely used methods to trace complex DNA samples to criminal defendants fall short of scientific standards.
Human Chimera Research’s Huge (and Thorny) Potentialby Paul KnoepflerWiredSeptember 19th, 2016A stem cell researcher notes a range of tough bioethical questions on the table if the NIH moves forward with lifting its research ban.
US toughens rules for clinical-trial transparencyby Sara ReardonNature NewsSeptember 16th, 2016Under new regulations, researchers must register information on the design and results of clinical trials within 21 days of enrolling their first patient, regardless of outcome.
Presidential Candidates on Scienceby Pete ShanksBiopolitical TimesSeptember 16th, 2016Hillary Clinton, Donald Trump and Jill Stein answer 20 questions about science policy.
DNA Dragnet: In Some Cities, Police Go From Stop-and-Frisk to Stop-and-Spitby Lauren KirchnerProPublicaSeptember 12th, 2016Private police DNA databases are multiplying, and are subject to no state or federal regulation or oversight.
5 Reasons Why We Need People with Disabilities in the CRISPR Debatesby Emily Beitiks, Biopolitical Times guest contributorSeptember 8th, 2016“Why do I have to keep justifying my existence?” How gene editing policy discussions reproduce ableist assumptions and generate advocacy fatigue.
Sperm Donor at Heart of Canadian Lawsuits Admits He Lied to Company Xytex, Police Sayby Diana MehtaThe Canadian PressAugust 30th, 2016Amidst pending lawsuits, Sperm Donor 9623 has turned himself in to the police for "falsifying paperwork."
Why Gene Tests for Cancer Don't Offer More Answersby Jessica WapnerScientific AmericanAugust 29th, 2016Genetic profiling of tumors has a long way to go. Many patients learn that their cancers have mutations for which no drug exists
The Little-Known History of the Forced Sterilization of Native American Womenby Erin BlakemoreJSTOR DailyAugust 25th, 2016Both the IHS and its dark history of forced sterilization were the result of longstanding, often ham-fisted attempts to "address" American Indians’ health care needs.
FBI’s New DNA Process Produces More Matches in Suspect Databaseby Devlin BarrettWall Street JournalAugust 25th, 2016In May, the Bureau reduced the number of genetic locations required for a potential match (from 10-13 to 8-9 loci), resulting in thousands of new "hits."
Babies’ Health Could Be Affected by Variation in IVF Nutrientsby Jessica HamzelouNew Scientist August 24th, 2016Pharmaceutical companies keep the "recipe" of IVF culture media a secret, but research suggests long-term health effects for resulting children.
Accessible Synthetic Biology Raises New Concerns for DIY Biological Warfareby Joseph NeighborVICE MotherboardAugust 23rd, 2016The monopoly on biology once held by governments and universities has been broken, posing significant challenges for the international community.
Staying Ahead of Technology’s Curvesby Doug HillBoston GlobeAugust 21st, 2016Embracing disruptive technologies without trying to anticipate and prepare for their potential consequences is now, more than ever, a bad idea.
These New Stem Cell Treatments Are Expensive — and Unprovenby Michael HiltzikLos Angeles TimesAugust 19th, 2016"Stem cells have become a medical buzzword," Paul Knoepfler notes. "I see a lot of businesses using direct marketing to patients to take advantage of that."
In CRISPR Fight, Co-Inventor Says Broad Institute Misled Patent Officeby Antonio RegaladoMIT Technology ReviewIs an email between competing researchers a smoking gun in the billion-dollar battle over patent rights for gene editing?
CRISPR patent fight: The legal bills are soaringby Sharon BegleySTATAugust 16th, 2016Editas has already spent $10.9 million in 2016. Many in the CRISPR field wonder privately why the Broad Institute and UC Berkeley have not reached a settlement.
What happens when anyone can edit genes at home? We’re about to find outby Dyllan FurnessDigital TrendsAugust 15th, 2016Scientists express concern about the unintentional consequences of gene editing starter kits proliferating in biohacking communities.
Illumina Would Like You to Sequence More DNA, Pleaseby Sarah ZhangWIREDAugust 15th, 2016The leader of the DNA sequencing market has a start-up accelerator program to find new applications for its technology.
Athletes are keeping their distance from a genetic test for concussion risksby Rebecca RobbinsSTATAugust 15th, 2016Sports competitors, insurers, and researchers are cautious about the privacy and geneticization issues behind testing for "athletic" genes.
Inside New York’s Radical Egg-Freezing Clinic for Women[citing CGS' Marcy Darnovsky]by Lizzie Crocker & Abby HaglageThe Daily BeastAugust 10th, 2016Extend Fertility in Manhattan offers egg freezing at half market price. It’s also the first standalone practice of its kind in the U.S.
Finding Good Pain Treatment Is Hard. If You’re Not White, It’s Even Harder.by Abby GoodnoughThe New York TimesAugust 9th, 2016Researchers have found evidence of racial bias and stereotyping in recognizing and treating pain among people of color, particularly black patients.
The Human Genome Is Having Its Facebook Momentby Whet MoserChicago MagazineAugust 9th, 2016In less than a decade, as many people could have their genomes sequenced as use the social networking site (~1.7 billion monthly users).
To Err is Biotechnological: Reflections on Pew’s Human Enhancement Surveyby Gina Maranto, Biopolitical Times guest contributorAugust 9th, 2016Biotechnologies aimed at human enhancement come with a guaranteed set of deficits, inadequacies, inconveniences, and risks.
How biotech executives profit from legal insider tradesby Damian GardeSTATAugust 8th, 2016Biotech bigwigs might be gaming an insider trading loophole to offset losses after failed clinical trials.
Silicon Valley was going to disrupt capitalism. Now it’s just enhancing itby Evgeny MorozovThe GuardianAugust 6th, 2016Tech giants thought they would beat old businesses but the guardians of capitalism are using data troves to become more, not less, resilient.
The surprisingly small benefit of some very (expensive) Big Ideasby Joe GibesBioethics @ TIUAugust 5th, 2016A new article in JAMA looks at the unfulfilled hype that has become entrenched in the fields of stem cells, genetics, and electronic health records.
The $100,000-Per-Year Pill: How US Health Agencies Choose Pharma Over Patientsby Fran QuigleyTruthoutAugust 5th, 2016Big Pharma wasn't always the beneficiary of US government-funded medicine breakthroughs. Then came the 1980s and the Bayh-Dole Act.
US government may fund research to combine human cells and animal cellsAssociated Foreign PressAugust 5th, 2016Stuart Newman asks: What if we have pigs with human brains and they are wondering why we are doing experiments on them? What about human bodies with animal brains? Could we harvest organs from them?
Questions about Deaths in Cancer Trials using Gene-Altered Cellsby Katherine DrabiakBiopolitical Times guest contributorAugust 5th, 2016Excitement about immunotherapy and gene therapy approaches to cancer has eclipsed ethical questions about seven recent deaths in clinical trials.
Many pediatric clinical trials go unpublished or unfinishedby Ed SilvermanSTATAugust 4th, 2016Of 559 clinical trials, 19% were discontinued. Of 455 completed trials, 30% never published results. Over 69,000 children participated.
NIH Plans To Lift Ban On Research Funds For Part-Human, Part-Animal Embryosby Rob SteinNPRAugust 4th, 2016Concerns include the inadvertent creation of animals with partly human brains, endowing them with some semblance of human consciousness or human thinking abilities. (Public comment until September 4.)
Bill to expand market in women’s egg donations would undermine safeguards[citing CGS]by Deborah OrtizSacramento BeeAugust 4th, 2016Let’s not repeal a law that safeguards the health of women. We can support biomedical research without putting women’s health at risk.
Editorial Precision? Snapshot of CRISPR germline in the newsby Hasmik DjoulakianAugust 1st, 2016Five questions about how the media talks about germline editing.
NY Times: Fresh and Major Attention to Immunotherapy and Cancerby David JensenCalifornia Stem Cell ReportJuly 31st, 2016The New York Times unveiled a dramatic special report on gene therapy and immunotherapy to treat cancer.
How Your Health Data Lead A Not-So-Secret Life Onlineby Angus ChenNPRJuly 30th, 2016The vast majority of mobile health apps on the marketplace aren't covered by the federal law protecting health data, HIPAA.
Stem Cell Therapies Are Still Mostly Theory, Yet Clinics Are Flourishingby Gina KolataThe New York TimesJuly 28th, 2016570 clinics in the United States are offering untested stem cell therapies.
THE HACKS WE CAN'T SEE: What Can a Hacker Do with Your Genetic Information?by Kaleigh RogersVICE MotherboardJuly 26th, 2016People might become vulnerable if hackers access genetic information through genetic testing databases.
Want to enroll in a clinical trial? NIH database is huge — but lacks a few key detailsby Emily BazarThe Washington PostJuly 26th, 2016Trial sponsors are not required to disclose that patients have to pay to participate.
Uncle Sam Wants You — Or at Least Your Genetic and Lifestyle Informationby Robert PearThe New York TimesJuly 23rd, 2016The Precision Medicine Initiative will seek participants from various geographies and socioeconomic statuses across the country.
Chinese scientists to pioneer first human CRISPR trialby David CyranoskiNature NewsJuly 21st, 2016Gene-editing technique to treat lung cancer is due to be tested in people in August.
Nudging patients into clinical trialsby Bradley J. FikesThe San Diego Union-TribuneJuly 20th, 2016Incentives include money and rewards such as iPads.
How Do You Regulate the Digital Health Revolution?by Laura EntisFortuneJuly 18th, 2016Digital health apps and other startups may claim to be more effective than they actually are.
The White House Is Pushing Precision Medicine, but It Won’t Happen for Yearsby Mike OrcuttMIT Technology ReviewJuly 18th, 2016Costs are high and the science is not developed enough.
Pro and Con: Should Gene Editing Be Performed on Human Embryos? by John Harris (Pro); Marcy Darnovsky (Con)National GeographicJuly 15th, 2016Harris: "Research on Gene Editing in Humans Must Continue"
Darnovsky: "Do Not Open the Door to Editing Genes in Future Humans"
The Direct-to-Consumer Stem Cell Industry in the USby Pete ShanksBiopolitical TimesJuly 15th, 2016There are more stem-cell clinics than anyone suspected, and it’s not clear that they are operating with proper supervision.
The EEOC’s Final Rule on GINA and Employer-Sponsored Wellness Programs to Take Effect This Monthby Jennifer K. WagnerGenomics Law ReportJuly 14th, 2016The Genetic Information Nondiscrimination Act now has updated regulations around health information obtained from employees' spouses.
No One Should Edit The Genes Of Embryos To Make Babies, NIH Chief Says[originally published as "At Gene Editing Meeting, Scientists Discuss God, Racism, Designer Babies"]by Nidhi SubbaramanBuzzFeedJuly 14th, 2016Opponents of germline gene editing have strong concerns about both the safety and social consequences of altering reproductive cells.
Considering Gene Editingby Jef AkstThe ScientistJuly 12th, 2016"Given the world as we know it, germline genetic enhancement could exacerbate the already obscene gap between the 'haves' and the 'have nots.'"
FDA Lets Cancer Trial Resume after 3 Patient Deathsby Damian GardeSTATJuly 12th, 2016After only two days, the FDA accepted Juno Therapeutics' reason for the deaths and allowed the trial to continue.
After a deadly clinical trial, will immune therapies for cancer be a bust?by Damian GardeSTATJuly 8th, 2016The deaths were caused by swelling in the brain during the clinical trial.
Eugenics bill passes Houseby Kevin EllisShelby StarJuly 7th, 2016The North Carolina bill will ensure that compensation payments to victims of the state's eugenic sterilization program are not counted as income.
President Obama’s 1-million-person health study kicks off with five recruitment centersby Jocelyn KaiserScience MagazineJuly 7th, 2016The early stages of the biobank are set in motion.
In clinical trials, for-profit review boards are taking over for hospitals. Should they?by Sheila KaplanSTATJuly 6th, 2016Commercial IRBs often have conflicts of interest.
Price Gouging and the Dangerous New Breed of Pharma Companiesby A. Gordon SmithHarvard Business ReviewJuly 6th, 2016Some pharmaceutical companies prioritize profits instead of research.
Influential Scientific Journal Rips Effort to Loosen Stem Cell Research Rulesby David JensenCalifornia Stem Cell ReportJuly 5th, 2016Proposed treatments have not received FDA approval due to inefficacy and safety concerns.
FDA should stand firm on stem-cell treatmentsby Editorial BoardNatureJuly 5th, 2016Regulation of stem cell treatments is critical, given that many of the treatments don't even work.
'False Hopes, Sizable Profits' -- The Nation's Largely Unregulated Stem Cell Clinicsby David JensenCalifornia Stem Cell ReportJuly 1st, 2016"The clinics use hope as a marketing tool. A weapon," writes Paul Knoepfler.
The Disappointing NAS Gene Drive Reportby Pete ShanksBiopolitical TimesJune 30th, 2016The National Academies report on gene drive technology has not yet provoked the widespread debate it deserves.
A DNA Test Won’t Explain Elizabeth Warren’s Ancestryby Matt MillerSlateJune 29th, 2016Could more data that would improve the precision of ancestry tests? Probably not — in fact, it might get more complicated.
The Supreme Court decision that's shaking up biotechby Damian GardeSTATJune 27th, 2016A lower court's decision will stand: Sequenom can't patent its prenatal gene test because it is based on a natural biological process.
All about the base: New businesses eye the opportunities in managing genome dataThe EconomistJune 25th, 2016Currently, one firm - Illumina - controls 70% of a market worth $3.3 billion in 2015.
Bill covering in vitro fertilization for injured veterans clears the House by Seattle Times StaffThe Seattle TimesJune 23rd, 2016Veterans Affairs is closer to paying for in vitro fertilization for injured soldiers seeking to have children.
Read Sonia Sotomayor’s Atomic Bomb of a Dissent Slamming Racial Profiling and Mass Imprisonmentby Mark Joseph SternSlateJune 20th, 2016Her dissent explains the extent to which police violate predominantly black and brown people's bodily integrity during "stop and frisk" procedures.
Workers May Soon Have To Share Health Data — Or Pay A Penaltyby Stephanie M. LeeBuzzFeed NewsJune 18th, 2016Ever thought about joining your work’s wellness program? The consequences of opting out could soon get stiffer.
First Human Test of CRISPR Proposedby Antonio RegaladoMIT Technology ReviewJune 16th, 2016The proposed cancer treatment is an immune therapy in which a patient’s own blood cells will be removed and genetically altered.
The Politics of Women’s Eggsby Diane ToberUndarkJune 10th, 2016A California bill would allow researchers to obtain eggs by paying women to provide them, though little research exists on the procedure's long-term health impacts.
Undertake a Clinical Trial at Your Own Riskby Steve SternbergUS News & World ReportJune 10th, 2016"Money should be set aside to care for people like me, if we're damaged in a clinical trial. We shouldn't be discarded."
DEA Wants Inside Your Medical Records to Fight the War on Drugsby Christopher MoraffThe Daily Beast June 9th, 2016The agency wants access to millions of private health files without a warrant, including those of two transgender men who are taking testosterone.
The National Academies’ Gene Drive study has ignored important and obvious issues by Jim ThomasThe Guardian June 9th, 2016Some important gaps in the study include an analysis of The report ducks questions about militarization, commercialization, and food security, but acknowledges there is "insufficient evidence to support the environmental release of gene drives."
Interview: “Democratic deliberation” and bioethicsby Nelson Michael & Xavier SymonsBioEdgeJune 8th, 2016A member of the Presidential Commission for the Study of Bioethical Issues discusses the state of US bioethics.
Unheard Publics in the Human Genome Editing Policy Debateby Elliot HosmanJune 8th, 2016The socially dangerous prospect of using genome editing tools for human reproduction underlies the need for caution in modifying embryos in basic research.
FDA chief aims to recruit 100 million Americans for precision medicine researchby Meghana KeshavanSTAT NewsJune 7th, 2016President Obama's Precision Medicine Initiative set a goal of recruiting a million volunteers to hand over their genetic and health data. The new head of FDA thinks that’s far too modest.
Senate eyes human egg business [California][citing CGS' Marcy Darnovsky]by David JensenCapitol WeeklyJune 7th, 2016"Offering large sums of money encourages women in need to gamble with their health. Bioethicists call it 'undue inducement.'"
Biden unveils launch of major, open-access database to advance cancer researchby Laurie McGinleyThe Washington PostJune 6th, 2016The Vice President says the Genomic Data Commons will encourage collaboration among scientists, and will protect patient privacy.
25 Scientists Just Made A $1 Billion Pitch To Build A Human Genome From Scratchby Nidhi SubbaramanBuzzFeedJune 2nd, 2016Drew Endy and Laurie Zoloth argue the project fails to ask a basic question: “Is developing capacities to synthesize human genomes a good idea?”
Scientists Announce HGP-Write, Project to Synthesize the Human Genomeby Andrew PollackThe New York TimesJune 2nd, 2016Synthesizing a human genome "immediately raise[s] numerous ethical and philosophical red flags," NIH director Francis Collins said.
Scientists Say They Hope To Create A Human Genome In The Labciting CGS' Marcy Darnovskyby Rob SteinNPRJune 2nd, 2016"The worry is that we're going to be synthesizing entire optimized human genomes...to produce synthetic human beings that they see as improved models," said Marcy Darnovsky.
California's StemCells, Inc., Flatlines; A Look at the Implicationsby David JensenCalifornia Stem Cell ReportJune 1st, 2016The company's sudden shutdown surprised and shocked some, but it also demonstrated the level of risk in stem cell research.
Mayo Clinic lands $142 million from NIH to build precision medicine biobankby Bernie MonegainHealthcare IT NewsMay 31st, 2016Mayo Clinic will provide infrastructure to store, analyze, and host data as part of a program that aims to enroll one million people to boost President Obama’s Precision Medicine Initiative.
What It Means To Be Human Is Changing Thanks To Gene Editingby Joe Matthews (Zócalo Public Square)Huffington PostMay 27th, 2016“We might be splitting in class between those who can afford to manage our children eugenically and those who cannot.”
How Gene Testing Forced Me to Reveal My Private Health Informationby Jody AllardViceMay 27th, 2016Genetic testing can yield inconclusive results and undermine people's privacy and access to life, disability, and long-term care insurance.
Bill Banning Mitochondrial Replacement Therapy Consideredby Tanya LewisThe ScientistMay 19th, 2016A US Senate committee is considering extending a ban on federal funds for research involving genetically modifying human embryos, which includes germline mitochondrial manipulation techniques.
UK should freeze mitochondrial replacement as Egli paper ID’s serious problemby Paul KnoepflerThe NicheMay 19th, 2016New research, which shows that transfer of one egg's nucleus into another egg might bring along diseased mitochondria, warrants putting an immediate hold on all efforts to use the technique in humans.
It's not just stem cell research that's overhyped—medical science spin is a widespread problemby Kelly CroweCBC NewsMay 18th, 2016The International Society for Stem Cell Research is urging scientists to manage public expectations.
Top scientists hold closed meeting to discuss building a human genome from scratch[citing CGS' Marcy Darnovsky]by Ike SwetlitzSTATMay 13th, 2016If we can build a synthetic genome — and eventually, a creature — from the ground up, then what does it mean to be human?
Federal Microbiome Project Aims to Solve Tiny Riddles of Scienceby Gardiner HarrisThe New York TimesMay 12th, 2016The latest federal scientific "moonshot" will focus on microbiomes, with the hope of medical, environmental, and agricultural benefits.
After rivals’ IPOs, will CRISPR Therapeutics go public or stay buttoned-down?by Damian GardeSTATMay 12th, 2016Like CRISPR Therapeutics, Intellia and Editas were once cagey about their development pipelines, but in documents filed with the government prior to their IPOs, they had to spell out the what, when, and how of their work.
In science, follow the money – if you canby Paul D. Thacker & Curt FurbergThe Los Angeles TimesMay 12th, 2016Disclosure and restrictions do not harm academic freedom. These policies still allow scientists to pursue research, while ensuring that public health is not put at risk in service of corporate profit.
Three Cambridge startups are on a mission to fix broken genesby Robert WeismanThe Boston GlobeMay 11th, 2016Editas, Intellia, and CRISPR Therapeutics aim to cure diseases from cancer to blood disorders, but these would-be gene editors also must navigate a new round of ethical questions.
Meet The Scientists Fighting For More Studies On Genes And Racial Differences In Healthby Peter AldhousBuzzFeedMay 11th, 2016Many question if medicine should seek genetic differences based on a social construct like race, diverting research away from environmental health impacts.
An Even Stranger Presidential Candidateby Pete ShanksBiopolitical TimesMay 5th, 2016Zoltan Istvan is running for president. I mean, for vice-president. I mean, from death and aging.
Public Opposes Human Germline “Enhancement” by Overwhelming Majorityby Pete ShanksBiopolitical TimesMay 5th, 2016New polls confirm that the public remains opposed to "enhancement" and is still not convinced about other proposed genetic interventions.
Scientists are trying to use CRISPR to fix everything. What’s wrong with that?by Emily McManusTED IdeasMay 5th, 2016A historian of eugenics asks: "Will individuals start making decisions to use new biotech to improve themselves and their children?"
Hacking CRISPR: Patents, Gene Therapy & Embryosby Elliot HosmanMay 5th, 2016As gene editing experiments on human embryos spread, piecemeal hacks of CRISPR are outpacing discussions of the futures it might enable.
Why this lab-grown human embryo has reignited an old ethical debate[citing CGS' Marcy Darnovsky]by Patrick MonahanScience/AAASMay 4th, 2016It’s easy to obey a rule when you don’t have the means to break it. Now two teams report growing human embryos nearly that long, prompting some scientists and bioethicists to contend that it’s time to revisit the so-called 14-day rule.
New advances in growing human embryos could prompt ethical firestorm[citing CGS' Marcy Darnovsky]by Eric BoodmanSTATMay 4th, 2016Changing the 14-day rule is an explosive question in an era when CRISPR gene-editing has sparked fears about “designer babies.”
Cultural Influences Reflected in Divergent US vs UK Human Embryo Research Policies[citing CGS' Marcy Darnovsky]by Eli Y. AdashiThe JAMA ForumMay 3rd, 2016Reactions to CRISPR gene editing experiments depend upon a country's existing laws and regulation.
Dead could be brought 'back to life' in groundbreaking projectby Sarah KnaptonThe Telegraph [UK]May 3rd, 2016A US biotech firm received permission to recruit 20 clinically dead patients for a stem cell treatment.
With CRISPR in Humans On the Horizon, Will the Public Back Intellia?by Alex LashXconomyApril 29th, 2016Intellia and Editas both lack what so many biotech investors crave: data from human clinical trials. As they race to the clinic, it's hard to tell if either company will pay off.
A Single $249 Test Analyzes 30 Cancer Genes. But Do You Need It?by Sarah ZhangWIREDApril 28th, 2016Color Genomics is marketing gene tests for 30 cancers, but doctors caution that our ability to sequence DNA has far outpaced our ability to understand what the results mean.
A DNA Sequencer in Every Pocketby Ed YongThe AtlanticApril 28th, 2016Oxford Nanopore Technologies, which severed financial ties with DNA sequencing monolith Illumina in 2013, is "desperately thinking of ways of bringing them down.” These include a USB-powered sequencer called the MinION.
Meet The New CEO Of The $22 Billion Genomics Company You've Never Heard Ofby Christine FarrFast CompanyApril 27th, 2016Gene-sequencing giant Illumina is expanding to direct-to-consumer tests and perhaps brand partnerships, says new CEO Francis deSouza.
Editorial: Editing human genes the CRISPR wayby Editorial BoardThe Chicago TribuneApril 27th, 2016Can we trust scientists and governments to set ethical boundaries for research and therapeutic use — and then stick to them? We're skeptical.
Here Are the Medals Given to Eugenically Healthy Humans in the 1920sby Ella MortonAtlas ObscuraApril 26th, 2016People were judged alongside livestock at state fairs in better baby and fitter family contests.
Dwarfism, Chemical Limb Lengthening, and Informed Consentby Joseph StramondoInternational Journal of Feminist Approaches to Bioethics BlogApril 25th, 2016A California biotech company is testing a drug designed to "normalize" annual growth but not address health complications of dwarfism.
God’s Red Pencil? CRISPR and The Three Myths of Precise Genome Editingby Jonathan LathamIndependent Science NewsApril 25th, 2016CRISPR is the latest platform in a 70-year-old "gospel of precision" used to justify moving quickly with new chemical and biological technologies, despite decades of disasters and unintended consequences.
US moves to sell gene-edited mushrooms fuel doubts over British ban on GM importsby Robin McKieThe Guardian April 23rd, 2016The USDA approved CRISPR-modified crops, but a European regulatory committee's delays are dismaying some UK researchers.
Researchers push for personalized tumour vaccinesby Heidi LedfordNature NewsApril 22nd, 2016Enthusiasm comes amid concerns about "irrational exuberance" over the rapid shift toward the personalized approach.
Save the Mosquitosby Ashley DawsonJacobinApril 22nd, 2016We should fight Zika with better public health, not genetically modified mosquitos.
Eric Lander talks CRISPR and the infamous Nobel ‘rule of three’by Joel AchenbachThe Washington PostApril 21st, 2016Lander urged scientific modesty about new gene editing tools: “We are terrible predictors of the consequences of the changes we make.”
Here’s Why that Race-Sex Abortion Ban Bill is So Discriminatoryby Sital KalantryWomen's eNewsApril 19th, 2016The bill accuses women of racially discriminating against their own fetuses.
Gene-edited CRISPR mushroom escapes US regulationby Emily WaltzNatureApril 14th, 2016A mushroom has become the first CRISPR-edited organism to attain approval for sale without USDA regulation.
CRISPR: Pursuit of profit poisons collaborationby Jacob S. SherkowNature April 13th, 2016Overzealous efforts to commercialize technology can damage science.
‘Buffer genes’ may protect these 13 people from rare genetic diseasesby Jocelyn KaiserScience/AAASApril 11th, 2016Researchers analyzed the DNA of 589,000 anonymous donors, but could not contact the 13 people to verify they were healthy.
Should Heritable Gene Editing Be Used on Humans?"YES" by George Church; "NO" by Marcy Darnovskyby Marcy Darnovsky & George ChurchWall Street JournalApril 10th, 2016Are there potential benefits? Are the risks to individuals and to society are too great?
Gender Selection As Part Of Advanced Reproductive Technology: Does The U.S. Prefer Boys Or Girls?[citing CGS' Marcy Darnovsky]by Amy SchaefferThe InquisitrApril 9th, 2016Some are concerned that selecting a non-disease preference like gender will pave the way for gene editing other preferred traits.
CIA’s Venture Capital Arm Is Funding Skin Care Products That Collect DNAby Lee FangThe InterceptApril 8th, 2016Skincential Sciences developed a patented technology that removes a thin outer layer of the skin for a youthful "glow"... and DNA collection.
10th Anniversary Baby Markets Congressby Elliot HosmanApril 7th, 2016Legal scholars, social scientists, advocates, and filmmakers grapple with assisted reproduction.
CRISPR dispute raises bigger patent issues that we’re not talking aboutby Shobita ParthasarathyThe ConversationApril 4th, 2016CRISPR patents will confer enormous control over how the controversial technology develops, and what kinds of human genetic engineering might become commercially available.
The Paradox of Precision Medicineby Jeneen InterlandiScientific AmericanApril 1st, 2016Early attempts to tailor disease treatment to individuals based on their DNA have met with equivocal success, raising concerns about a push to scale up such efforts.
Report Shows Theranos Testing Plagued by Problemsby Andrew PollackThe New York TimesMarch 31st, 2016The company used unqualified personnel, stored samples at improper temperatures, and failed to ensure that the quality control for an important blood-clotting test was acceptable before reporting results for patients.
Race, Reparations and the Search for Our Molecular Soulby Michael SchulsonReligion Dispatches (USC Annenberg)March 30th, 2016In a recent book, Alondra Nelson maps the rise of genetic testing among African Americans, investigating the ways that genetic technology is crossing over into social and political worlds.
REGROW Act is Attack on Science-Based Stem Cell Trial Oversightby Paul KnoepflerThe NicheMarch 28th, 2016Paul Knoepfler challenges the REGROW Act, which would allow stem cell researchers to bypass some of the FDA's typical regulatory mechanisms.
If we don’t own our genes, what protects study subjects in genetic research?by Leslie E. Wolf, Erin Fuse Brown, and Laura BeskowThe ConversationMarch 28th, 2016Genetic research studies like the Precision Medicine Initiative require corresponding inquiry into the protection of participants and their genetic information.
Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?by Genevieve FieldThe New York Times MagazineMarch 22nd, 2016Caring for people with severe mental and physical limitations becomes harder as they get older. Some parents believe medically stunting them is the answer — but is it ethical?
Whose Body, Whose Property, What Choice?by Alison Irvine & Katayoun Chamany, Biopolitical Times guest contributorsMarch 21st, 2016A recent panel at The New School brought together speakers on health psychology, queer studies, law, life sciences, and more to discuss bodies purchased for labor and care in assisted reproduction.
Texas Woman Is the First Person to Undergo Optogenetic Therapyby Katherine BourzacMIT Technology ReviewMarch 18th, 2016Beyond the implications for treating blind people, this gene therapy trial is also being watched by the neuroscience community.
Why Surrogacy Laws Must Be Established — the Story of the Ott-Dahlsby Keston Ott-DahlHuffPostMarch 18th, 2016When my partner Andrea became a surrogate for another lesbian couple we had no idea we would end up starting over as new parents.
The Limits of Personalized Medicineby Timothy CaulfieldThe AtlanticMarch 16th, 2016A new study suggests that knowing their genetic risk of disease doesn’t motivate people to change their behavior.
Scientists develop new human stem cells with half a genomeby Bill BerkrotReutersMarch 16th, 2016Stem cells derived from a human egg are the first human cells known to be capable of division with just one copy of the parent cell's genome.
Jordan Schnitzer Gets a Son—and a Court Battle[cites CGS' Marcy Darnovsky]by Nigel JaquissWillamette WeekMarch 16th, 2016A Portland real estate mogul used science and the law to select the sex of his child born via surrogate. The baby's parentage is now in dispute.
Of evil mice and men: Can we blame crime on our genes?by Alan MartinAlphrMarch 14th, 2016Various studies are finding genetic and mental indicators for criminal behaviour - in lab mice.
People Are Going To Prison Thanks To DNA Software — But How It Works Is Secretby Stephanie M. LeeBuzzFeedMarch 12th, 2016Private companies are developing cutting-edge DNA analysis software used to convict people, but source codes are protected from independent validation because they are "trade secrets."
Jennifer Doudna: The Promise and Peril of Gene Editingby Alexandra WolfeWall Street JournalMarch 11th, 2016Some scientists have called for a moratorium on using gene-editing techniques to bring about heritable genetic changes in humans.
Uterus Transplants: Identifying Stakeholders & Objectionsby Elliot HosmanMarch 10th, 2016Clinical trials have migrated from Sweden to the US, and questions regarding safety, ethics, and social justice are mounting.
Forensics gone wrong: When DNA snares the innocentby Douglas StarrScience/AAASMarch 7th, 2016Biologist Greg Hampikian heads the Idaho Innocence Project, and uncovers instances where DNA evidence was false or misconstrued.
'Idiocracy' Is One of the Most Elitist and Anti-Social Movies Ever—Why Do Liberals Love Referencing It?by Adam JohnsonAlterNetMarch 4th, 2016"The pro-eugenics 2006 film finds a home with confused liberals who would rather blame bad breeding than structural classism and racism."
The Brain Gets Its Day in Courtby Greg MillerThe AtlanticMarch 1st, 2016A new study found that the number of judicial opinions referencing neuroscience as evidence more than doubled between 2005 and 2012.
Human Babies from CRISPR Pigsby Stuart NewmanHuffPost ScienceFebruary 29th, 2016300 years after Jonathan Swift, can anyone doubt that the grandchildren of some people born this year will be delivered fresh off the farm?
The Possibility Of A Three-Parent Baby[cites CGS' Marcy Darnovsky]by Indira LakshamananThe Diane Rehm ShowFebruary 25th, 2016A discussion about the science, ethics, and politics of a controversial technique that is a form of inheritable genetic modification.
The FDA Now Officially Belongs to Big Pharma by Martha RosenbergAlterNetFebruary 24th, 2016The new FDA commissioner, overwhelmingly confirmed by the Senate, is on record arguing that collaboration between industry and regulators is a good thing.
The Troubling Rise of Rapid DNA Testingby Ava KofmanNew RepublicFebruary 24th, 2016Your DNA can now be read in less time than it would take to wait at a typical DMV. New portable rapid DNA devices may represent a giant leap backward for civil liberties.
Harvard’s Eugenics Eraby Adam S. CohenHarvard MagazineFebruary 19th, 2016Given that Harvard affiliates will play a large role in genetic engineering, it is important to contemplate how wrong so many people tied to the University got it the first time—and to think hard about how, this time, to get it right.
This Entrepreneur Is Using Big Data to Help More Women Get Pregnantby Leena RaoFortuneFebruary 18th, 2016Celmatix’s algorithms compare a database of millions of women who have tackled fertility issues to a patient’s personal health and fertility data.
Caribou Bio’s New CRISPR Patent Isn’t About Gene Editingby Alex LashXconomyFebruary 18th, 2016A new patent highlights a lower-profile potential use for the "gene editing" biotechnology: genetic detection and analysis.
For Fertility Treatment, Wounded Veterans Have To Pay The Billby Quil LawrenceNPRFebruary 17th, 2016A law passed in 1992 made it illegal for the VA to pay for IVF, which some people oppose because embryos are often destroyed. But thousands of vets have injuries that make IVF their only option for having a family.
If You Want Life Insurance, Think Twice Before Getting A Genetic Testby Christina FarrFast CompanyFebruary 17th, 2016As genetic testing explodes, US federal law bans health insurers from denying coverage based on results. But the same doesn't apply for disability, life insurance, or long-time care.
Egg Donation and Surrogacy Scam [Press Release]U.S. Federal Bureau of InvestigationFebruary 16th, 2016A California fertility broker defrauded would-be parents, egg donors, and surrogate mothers while living a lavish lifestyle off the proceeds, says the FBI.
Is a Surrogate a Mother?[cites CGS' Marcy Darnovsky]by Michelle GoldbergSlateFebruary 15th, 2016A battle over triplets raises difficult questions about the extent to which contracts can deal with pregnancy, childbirth, and transferring parental rights in a commercial setting.
Cautious approach warranted for new gene-editing techniqueby Paul KnoepflerThe Sacramento BeeFebruary 13th, 2016We urgently need a moratorium on using CRISPR technology on future people, and a full public debate while we learn more about its potential positive and negative effects.
It should be safety-first on stem cell therapiesby EditorialThe Boston GlobeFebruary 12th, 2016The FDA appears poised to take comprehensive action that would strengthen the rules governing stem cell therapies, with a public hearing on April 13 to inform draft guidelines.
STAT-Harvard poll: Americans say no to ‘designer babies’by Sharon BegleySTATFebruary 11th, 2016Most Americans oppose using powerful new technology to "alter the genes of unborn babies," according to a new poll, even to prevent serious inherited diseases.
Race, Genetics, Societyby Elliot HosmanFebruary 11th, 2016We highlight recent research by CGS Advisory Board member Dorothy Roberts, a CGS position opening, and our recent news and resources on race and genetics.
We Are This Close to "Designer Babies"[cites CGS' Marcy Darnovsky]by Nina Liss-SchultzMother JonesFebruary 8th, 2016Issues to consider in light of the UK's approval of using CRISPR gene editing on human embryos for research.
A Cautious Approach to Mitochondrial Replacementby Françoise BaylisImpact EthicsFebruary 3rd, 2016While the motivation with mitochondrial replacement (MRT) is distinct from cloning, the transfer technology is the same. MRT can legitimately be seen as a “quiet way station” in which to refine the techniques essential for other genetic interventions (including cloning).
Pentagon to Offer Plan to Store Eggs and Sperm to Retain Young Troopsby Michael S. SchmidtThe New York TimesFebruary 3rd, 2016A pilot program will pay for troops to have their gametes frozen, in an effort to make military service more appealing and family friendly.
Center for Genetics and Society Comments on Just-Released Report on Germline Mitochondrial Manipulations[Press statement]February 3rd, 2016The National Academy of Medicine's report conclusion – that no ethical or policy considerations stand in the way of clinical investigations going forward – seems at odds with the many cautions, risks, and concerns that it raises.
We Are Not Ready to Edit Human Embryos Yetby J. Craig VenterTimeFebruary 2nd, 2016Due to our insufficient knowledge, the slippery slope to human enhancement, and the global ban on human experimentation, we need to better understand the software of life before we begin re-writing this code.
DNA Got a Kid Kicked Out of School—And It’ll Happen Againby Sarah ZhangWiredFebruary 1st, 2016Genetic discrimination. Get used to those two words together. With DNA tests cheap and readily available, the potential for discrimination based on the results has gone way up.
We Need More Proof That Prenatal Gene Screens Are Beneficialby The EditorsScientific AmericanFebruary 1st, 2016Results from screening tests can be misleading. Industry and federal regulators are not doing enough to ensure that people get all the information they need.
A Monkey Circles in a Cageby Elliot Hosman, Biopolitical TimesJanuary 29th, 2016Researchers created transgenic monkeys with a gene duplication associated with Rett Syndrome autism in humans, raising concerns of the limits and ethics of using animal models in biomedical research.
Who's Looking to Profit from Human Germline Changes?by Pete ShanksBiopolitical TimesJanuary 28th, 2016Billionaire Randal Kirk has assembled the components to commercialize heritable human genetic modification.
Human Genetic Alteration and Gold Mines: California's Stem Cell Agency Takes a Hard Look at Research Standardsby David JensenCalifornia Stem Cell ReportJanuary 27th, 2016The $3 billion California stem cell agency will convene a livestreamed day-long meeting to examine agency policies dealing with human gene editing.
The Battle Over CRISPR Could Make Or Break Some Biotech Companies[cites CGS' Marcy Darnovsky]by Farai ChideyaFiveThirtyEightJanuary 25th, 2016CRISPR is caught up in public offerings and a patent dispute. If used to "edit" heritable traits, it could lead us into a world of genetic haves and have-nots.
Down's Syndrome people risk 'extinction' at the hands of science, fear and ignoranceby Tim StanleyThe TelegraphJanuary 18th, 2016The true moral test of a society is not how pretty, sober or well organised it is – but how it treats its most vulnerable, even its most difficult, citizens.
CRISPR Patent War: Billions at Stake for UC Berkeleyby Lindsey HoshawKQEDJanuary 15th, 2016Whoever gets the patent will set the terms for how the technology is used.
Hemophilia Patient or Drug Seller? Dual Role Creates Ethical Quandaryby Andrew PollackThe New York TimesJanuary 13th, 2016Drugs for hemophilia are so lucrative, drugmakers are hiring patients and their relatives to gain an inside track and access in selling their products.
The Third Rail of the CRISPR Moonshot: Minding the Germlineby Elliot Hosman, Biopolitical TimesJanuary 13th, 2016Millions of dollars are flowing to biotech companies developing gene-editing therapies. Fortunately, most are publicly denouncing germline applications.
Bay Area biologist's gene-editing kit lets do-it-yourselfers play God at the kitchen tableby Lisa M. KriegerContra Costa TimesJanuary 11th, 2016"I want to democratize science," says Josiah Zaynor, who builds inexpensive CRISPR kits to encourage non-scientists to learn genome editing skills.
Why Is Sperm So Damn Expensive?by Brittany MaloolyVICE BroadlyJanuary 10th, 2016On the sperm market, the amount of labor that's involved in obtaining so-called premium gametes drives sperm prices sky high.
False Inevitabilities and Irrational Exuberanceby Gina Maranto, Biopolitical Times guest contributorJanuary 8th, 2016In the aftermath on December’s gene editing summit, disquieting themes have emerged in some mainstream media and science blogs.
Historic CRISPR Patent Fight Primed To Become Head-To-Head Battleby Alex LashXconomyJanuary 4th, 2016A USPTO patent examiner recommends kicking Jennifer Doudna's application upstairs. The case will be decided under the old "first to invent" standard.
A startup that wants to start using a controversial gene-editing tool in people by 2017 just filed to go publicby Lydia RamseyBusiness InsiderJanuary 4th, 2016Editas Medicine, co-founded by Feng Zhang, is developing a CRISPR gene therapy for rare blindness with human trials planned for 2017.
Whatever Happened to Human Experimentation?by Carl ElliottHastings Center ReportJanuary 1st, 2016The choice to abandon the word “experiment” is emblematic of a larger movement beginning in the 1990s, in which many bioethics scholars moved from being critics of the research enterprise to being its champions.
CRISPR helps heal mice with muscular dystrophyby Jocelyn KaiserScience/AAASDecember 31st, 2015Three research groups report using CRISPR in mice to modify a gene associated with Duchenne muscular dystrophy, the first time CRISPR has been delivered throughout the body to treat grown animals with a genetic disease.
The problem with science journalism: we’ve forgotten that reality matters mostby Brooke BorelThe GuardianDecember 30th, 2015It is the reporter's job to maintain skepticism, look beyond hypotheses and data, find conflicts of interest, trace the money, look at power structures, and see who is excluded or marginalized.
The Chances Of Success For IVF Improve The More Times You Do It, Study Finds, But It Also Highlights The Gap In Accessibilityby Erin McKelle FischerBustleDecember 30th, 2015Multiple rounds of IVF require tens of thousands of dollars and months to years of treatment; success is often only for the privileged.
Rulemaking Under Way for DNA Testing for Hawaiian Homelandsby  Jennifer Sinco KelleherABC NewsDecember 28th, 2015The Department of Hawaiian Home Lands has proposed rules that would allow the use of DNA evidence to prove ancestry.
First GMO Corn, then Frankenfish, and Now — Get Ready for Designer Babies[cites CGS' Marcy Darnovsky]by Janet PhelanActivist PostDecember 25th, 2015“The medical arguments are tenuous and the possible social consequences are grave” for modifying the human germline.
Synthetic Biology's Defense Dollars: Signals and Perceptions by Dr. Filippa LentzosPLOS BlogsDecember 24th, 2015DARPA aims to develop radically new, game-changing technologies for national security and to create technological surprises for its enemies.
Biopolitical News of 2015by Elliot Hosman, Pete Shanks & Marcy Darnovsky, Biopolitical TimesDecember 22nd, 2015We highlight 2015’s breaking news stories about human biotech developments.
Top Biopolitical Times Posts of 2015by Elliot Hosman, Pete Shanks & Marcy Darnovsky, Biopolitical TimesDecember 20th, 2015Here are a few of our favorites blogs of 2015.
Policing the ethics police: Research review boards face scrutiny as feds propose new rulesby Sabriya RiceModern HealthcareDecember 12th, 2015Critics say Institutional Review Boards are too lax, have unqualified members, are riddled with conflicts of interest, and are overwhelmed by the volume of studies they must review.
Weak Arguments For Modifying the Human Germlineby Pete ShanksBiopolitical TimesDecember 10th, 2015At the International Summit on Human Gene Editing, philosopher John Harris engaged in tired and absurd attempts to justify engineering future humans.
Livetweeting #GeneEditSummit: Democratized Debate or Segregated Conversations?by Elliot Hosman, Biopolitical TimesDecember 10th, 2015Though #GeneEditSummit was trending on Twitter, inclusive public debate must be more robust than the livetweeting of insular stakeholder meetings.
F.D.A. Attention to Inaccurate Lab Tests Defers Hopes of “Precision Medicine”by Jessica Cussins, Biopolitical TimesDecember 9th, 2015If we lose trust in medical tests, the foundation of “precision medicine” could fall apart.
Florida Police Used a Smidgen of DNA to try to Fully Reconstruct an Alleged Criminal's Faceby Erin BrodwinBusiness InsiderDecember 2nd, 2015Parabon Nanolabs recently analyzed some remnants of DNA from a crime scene — not for fingerprints, but to create a digital likeness of the alleged criminal's face.
Extreme Genetic Engineering and the Human FutureReclaiming Emerging Biotechnologies for the Common GoodThe Center for Genetics and Society and Friends of the Earth examine the human applications of synthetic biology. This 50-page report challenges claims that this new set of genetic engineering techniques should be seen as "the future of manufacturing, engineering and medicine."
A Controversial Rewrite For Rules To Protect Humans In Experimentsby Rob SteinNPRNovember 25th, 2015The U.S. Department of Health and Human Services is proposing a major revision of the Common Rule, the first change proposed in nearly a quarter-century, prompting concerns.
DNA = Donors Not Anonymousby Wendy KramerHuffington PostNovember 25th, 2015I can't help but wonder when the sperm banks and egg clinics will start acknowledging that there is no such thing as guaranteed donor anonymity.
First CRISPR Gene Drive in Mosquitoes Aims to Eradicate Malariaby Antonio RegaladoMIT Technology ReviewNovember 23rd, 2015The scientific community is at odds over whether it is safe to release a "selfish" gene into the wild.
F.D.A. Targets Inaccurate Medical Tests, Citing Dangers and Costsby Robert PearThe New York TimesNovember 23rd, 2015Inaccurate and unreliable medical tests are prompting abortions, unnecessary surgeries, putting tens of thousands of people on unneeded drugs and raising medical costs.
Putting a Price on Human Eggs Makes No Senseby Debora SparFortuneNovember 21st, 2015No one wants to deal with the ugly reality that egg donation is not donation at all, but a high price paid for a piece of one’s body.
F.D.A. Takes Issue With the Term ‘Non-G.M.O.’by Stephanie StromThe New York TimesNovember 20th, 2015"They’re conflating a very new and novel technology with traditional types of breeding...It’s like saying an abacus is very much like a computer."
Scientists may soon be able to 'cut and paste' DNA to cure deadly diseases and design perfect babiesby Tanya LewisBusiness InsiderNovember 19th, 2015CRISPR gene editing tools are being proposed for a wide range of uses, many of which pose risks to ecological systems and human society.
CRISPR Gene Editing: Proofreaders and Undo Buttons, but Ever "Safe" Enough?by Elliot Hosman, Biopolitical TimesNovember 19th, 2015Recent trends include research reports of "spellcheck" and "undo" functions associated with CRISPR gene editing, and a shift toward greater caution about germline applications.
Gene Therapy: Comeback? Cost-Prohibitive?by Elliot Hosman, Biopolitical TimesNovember 19th, 2015Recent CRISPR news sometimes confuses germline modification - which should be put off limits - and gene therapy, which presents its own set of social and ethical risks to resolve before rushing to market.
New Rules Proposed to Address Privacy and Trust in the Precision Medicine Initiativeby Katayoun Chamany, Biopolitical Times guest contributorNovember 19th, 2015The US Precision Medicine Initiative's goal of a million sequenced genomes is helping to propel a revision to the Common Rule governing human subject research.
Gene Manipulation In Human Embryos Provokes Ethical Questions[cites CGS' Marcy Darnovsky]by Rahel GebreyesHuffPost LiveNovember 17th, 2015CGS's Marcy Darnovsky discusses the social implications of leveraging CRISPR gene editing tools to pursue enhanced children.
Why FBI and the Pentagon are afraid of gene drivesby Sharon BegleyStat NewsNovember 12th, 2015Officials from DARPA to the United Nations bioweapons office are concerned about the potential of “gene drives” to alter evolution in ways scientists can’t imagine.
Theranos isn’t the only diagnostics company exploiting regulatory loopholesby Arielle Duhaime-RossThe VergeNovember 11th, 2015Startups are taking advantage of an FDA exception to offer diagnostic health tests to consumers without peer review or verification of health claims.
The Risks of Assisting Evolutionby Elizabeth AlterThe New York TimesNovember 10th, 2015Crispr-Cas9 and gene drive allow us to bend evolution to our will, but will they spark an ecological catastrophe?
Eggs unlimitedby Jennifer Couzin-FrankelScienceNovember 6th, 2015OvaScience's fertility procedure appalls some reproductive biologists, and is currently not permitted in the US. But the company is marketing its treatment in Canada and some analysts are upbeat.
Should Human Stem Cells Be Used To Make Partly Human Chimeras?by Rob SteinNPRNovember 6th, 2015The NIH has declared a moratorium on research that puts human stem cells into nonhuman animal embryos.
As Companies Collect More Health Data, Cops Will Ask To See It[cites CGS' Elliot Hosman]by Stephanie M. LeeBuzzfeedNovember 5th, 2015Law enforcement will request what users share with health technology companies, from DNA to step counts. The nature and number of those requests are largely unknown.
Everything you need to know about why CRISPR is such a hot technology[cites CGS]by Dominic BasultoThe Washington PostNovember 4th, 2015Venture capital is responding to the hype surrounding new genetic engineering tools, but many are concerned by the controversial proposition of genetically modifying new humans.
How Much Should a Woman Be Paid for Her Eggs?by Jacoba UristThe AtlanticNovember 4th, 2015Is the money a woman receives for her eggs payment for her services, her discomfort, or her biological property?
Would you edit your unborn child’s genes so they were successful?by Mairi LevittThe GuardianNovember 3rd, 2015A parent’s desire to do the best for their child could create problems.
Genetic testing evolves, along with health and ethics debatesby Michael HiltzikLos Angeles TimesOctober 30th, 2015The FDA approved 23andMe to provide carrier tests, turning the personal genomics service into a direct-to-consumer family-planning tool, but without the genetic counselor to explain carrier status risks.
Genetic Surveillance: Consumer Genomics and DNA Forensicsby Elliot Hosman, Biopolitical TimesOctober 29th, 2015As more biotech companies move to “cash in on the genome,” we need to connect the conversations on personal genomics, DNA forensics, immigration, and biological discrimination.
Gene Editing and Eugenics (Opinions Vary)by Pete ShanksBiopolitical TimesOctober 29th, 2015A recent commentary on the UK law allowing clinical use of mitochondrial replacement celebrates it as a benign form of eugenics. Is there such a thing?
Who Owns Molecular Biology?by Yarden KatzBoston ReviewOctober 28th, 2015A researcher at the Broad Institute explores the patent issues surrounding CRISPR-Cas gene editing, and argues for a more just sharing and distribution system for scientific research.
NAS Human Gene Editing Meeting: Agenda & Public Participationby Paul KnoepflerThe NicheOctober 26th, 2015The National Academies have released a draft agenda for the upcoming summit on human gene editing.
Making Indigenous Peoples Equal Partners in Gene Researchby Ed YongThe AtlanticOctober 23rd, 2015After leaving a partnership with NIH in 2003, the Akimel O’odham (Pima) tribe is retaining control of their bio samples and shaping the goals of a diabetes project with genomic researchers.
Cops Want To Look At 23andMe Customers’ DNAby Stephanie M. LeeBuzzFeedOctober 21st, 2015The FBI and other agencies have asked for — and been denied — five users’ data, according to a new transparency report on the company's website, and chain of custody could be a legal obstacle for future requests.
23andMe Will Resume Giving Users Health Databy Andrew PollackThe New York TimesOctober 21st, 2015Two years after a forced hiatus from providing consumers with genetic health probabilities, the FDA has cleared 23andMe to provide carrier status and lactose intolerance tests.
Indigenous peoples must benefit from scienceby Dyna RochmyaningsihNature NewsOctober 20th, 2015The triple helix of science, the private sector, and government have driven the world’s economy since the Industrial Revolution, but to drive sustainable development, science must empower rural communities — not just serve industry and governments.
What's Your DNA Worth? The Scramble to Cash In On The Genome[cites CGS' Marcy Darnovsky]by Alex LashXconomyOctober 20th, 2015Vast pools of genomic data may unlock health secrets, but what is the risk of "sharing" our data for biotech corporate profits, and is it greater than the nebulous future rewards?
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