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Texas High School’s “Issues Day” Takes on Human Genetic Engineering

Posted by Jessica Cussins on March 26th, 2014


On March 20, I participated in Saint Mary’s Hall high school’s annual Issues Day in San Antonio, Texas. The topic this year, chosen by a committee of the junior class, was Genetic Engineering: Conscious Evolution or Immoral Technology? (See the program here.)

The other speakers were Daniel Eichner, Executive Director of the Sports Medicine Research & Testing Laboratory; Ron Epstein, Professor Emeritus of Dharma Realm Buddhist University; Doug Frantz, Associate Professor of Chemistry at The University of Texas at San Antonio; Linda MacDonald Glenn, Assistant Professor at the Center for Biomedical Ethics Education and Research, Albany Medical College; and Jeffrey Steinberg, Director at The Fertility Institutes.

Each of the speakers came to the question from a different perspective, which provided for fascinating presentations and a rich, passionate debate during the “crossfire” that followed. Students tweeted their questions to a shared Twitter wall and David Henderson, Chief of the DWI Task Force at the Bexar County District Attorney’s Office, moderated the lively discussion.

The students who chose the topic of human genetic engineering for the event recognized the importance of grappling with this question now, as new technologies and potential changes in policies around the world could make a procedure that constitutes human germline modification a reality this year.

I was happy to participate in the event and have the opportunity to discuss these important issues with so many bright young people. Photos of the event will be available soon; join CGS on Facebook to view them when they do.

Previously on Biopolitical Times:





Review: Finding Our Families: A First-of-Its-Kind Book for Donor-Conceived People and Their Families

Posted by Diane Beeson, Biopolitical Times guest contributor on March 26th, 2014


For millions today, the concept of family is being redefined. Modern assisted reproduction techniques have enabled infertile couples (straight or gay) and people without partners to have children, and to be genetically related to their children, but in a non-traditional way.

These children have a genetic link to only one parent, while also being genetically related to a person not involved in their upbringing – the “donor” of sperm or eggs, who often remains anonymous. Such arrangements, which have become increasingly common over the past couple decades, raise an important question for those conceived via “donor” egg or sperm: Is secrecy about their origins in the children’s interest?

The answer to this question is a resounding No, according to Wendy Kramer and Naomi Cahn, the authors of Finding Our Families: A First-of-Its-Kind Book for Donor-Conceived People and Their Families.

A new “donor community” is emerging to challenge the secrecy that the authors argue has too long surrounded sperm, egg and embryo donation. Donor-conceived offspring are using communication and genetic technologies to search for, and find, their sperm or egg donors, half-siblings and other genetic relatives.

No one has been more influential in this movement to end donor anonymity than author Wendy Kramer, who with her son Ryan founded the Donor Sibling Registry. In this stunningly honest book, she and her coauthor, family and adoption law expert Naomi Cahn, make a compelling case that secrets have a corrupting influence on family life.

Opponents of openness justify their position with the argument that what matters is the social relationship of the intended parents to the offspring, not the genetic tie to the donor. Yet, as the authors make clear, this is a highly hypocritical stance given that many families choose donor conception over adoption precisely because they want at least one parent to have a genetic connection to their child.

The authors draw on the experience of many donor-conceived offspring and their family members to convincingly argue that openness about donor conception is the best path to strengthening bonds with social parents and other family members, as well as providing more complete medical information. Openness, in their view, is essential to the self-esteem and healthy identity formation of the donor-conceived child and adult.

Chapters in the book are specifically addressed to parents, offspring, and prospective parents. Personal experiences of many members of the “donor community” are interlaced with research findings and sensitive advice for negotiating the social and emotional challenges of each stage of the process of disclosing donor conception, searching for, and connecting with genetic relatives. Moving accounts of Wendy and her son’s often frustrating, but ultimately successful, search for his anonymous donor and the discovery of half-siblings keep the reader turning pages.

The authors stop short of questioning the unbridled commercialization of human gametes in the US. They accept the euphemistic use of the term “donation” for what are, in fact, sales of eggs and sperm — usage that reveals our cultural ambivalence about these practices. Yet they acknowledge the discomfort among some donor offspring that one’s biological parent “so easily sold their genetic heritage.”

The concluding chapter makes six excellent recommendations for reforms related to the fertility industry, the most significant being a call to end donor anonymity. If implemented, these would go a long way toward humanizing reproductive medicine in the US and bring us more in line with practices in other developed nations.





Letter to HFEA: Consider the Risks of “Mitochondrial Manipulation” Discussed by the FDA

Posted by Marcy Darnovsky on March 21st, 2014


On March 21, 2014, the Center for Genetics and Society sent a letter signed by 53 prominent scholars and advocates to the UK’s Human Fertilisation and Embryology Authority (HFEA) in response to its "Call for evidence: Update to scientific review of the methods to avoid mitochondrial disease."

The letter points to the risks and cautions that emerged in discussions by members of a US Food and Drug Administration Advisory Committee at last month’s meeting about the safety and efficacy of “mitochondrial manipulation” techniques that would constitute a form of human germline engineering. In particular, the letter notes that after some eleven and a half hours of discussion, the FDA concluded that more animal and in vitro data is needed prior to any human trials.

Based on a review of the HFEA’s published documents, it appears that a number of the concerns raised by the FDA advisory committee may not yet have been fully considered in the HFEA’s past reviews.

The HFEA’s “Call for evidence” was apparently posted quietly on March 7, with responses due just two weeks later on March 21.

The HFEA now has an opportunity to carefully examine this information. Its review of the current scientific evidence about the safety and efficacy of so-called “mitochondrial manipulation” techniques will be sent to the Department of Health in May, and then presented to the Parliament when it votes on the issue later this year.

Please see the letter to the HFEA review panel here. For much more information on this issue, see CGS's "3-Person Embryo" resource page.

If you agree with its concerns, or have other safety and efficacy issues that you would like to bring to the attention of the HFEA panel, we encourage you to email them to the Mitochondria Review Policy Team at mitochondriareview@hfea.gov.uk.

Notwithstanding the  March 21 deadline, we hope the review panel will consider all the communications it receives.

Previously on Biopolitical Times:





Chinese Billionaire Funding CRISPR Research at University of California

Posted by Pete Shanks on March 19th, 2014


Li Ka-shing with Prime
Minister David Cameron

Here's a mundane, self-promoting press release from UC Berkeley:

New DNA-editing technology spawns bold UC initiative
The University of California, Berkeley, and UC San Francisco are launching the Innovative Genomics Initiative (IGI) to lead a revolution in genetic engineering based on a new technology already generating novel strategies for gene therapy and the genetic study of disease.

GenomeWeb got closer to the real story:

UC Berkeley, UCSF Use $10M Gift to Launch CRISPR Initiative, Center

The project is the latest of several initiatives to explore the potential of the Crispr gene-editing technology. Executive Director Jennifer Doudna was one of the founders, late last year, of Editas, a commercial venture based on the same research. Also announced by UC Berkeley was an Entrepreneurial Fellows program, which "will coordinate with the QB3 Startup-in-a-Box program to help launch new companies that address important societal challenges and create new jobs in California."

The UC campuses are putting up $2 million total; the $10 million is coming from the Li Ka Shing Foundation, which was set up by Asia's richest man. The foundation was reported in 2012 to have assets of $8.3 billion (it made a bundle on Facebook and other high-tech investments), while Li Ka-shing personally is said to have assets of $31 billion.

The Foundation has been involved with UC Berkeley for several years, having put $40 million into the Li Ka Shing Center for Biomedical and Health Sciences, which opened in 2012. It has also been active at Stanford University ($37 million) and in January announced a $3 million grant for a joint venture between Stanford and Oxford University. Altogether it has dispersed at least $1.6 billion.

In 2013, the usually publicity-shy billionaire attended the launch of the £20m (about $33 million) Li Ka Shing Centre for Health Information and Discovery at Oxford with Prime Minister David Cameron. (His British connections go back to the days when Hong Kong was a colony; he was knighted in 2000 [pdf] for "services to British industry and to medical research.") The link with Stanford is a natural outgrowth of this enterprise.

The Oxford project is a controversial "big data" center, which has been criticized by, among others, Helen Wallace of GeneWatch UK for showing "a shocking disregard for democratic processes and for people's right to choose where their personal and genetic information can end up, and how it can be used."

By coincidence, the New York Times published a long article on March 15 titled:

Billionaires With Big Ideas Are Privatizing American Science

We may be sure it's a coincidence because the article mentioned two dozen major philanthropists by name – but not Li Ka-shing. Several other prominent donors were passed over too, including stem-cell activist Jim Stowers (who died on March 17); John Templeton, whose foundation focuses on connecting science and religion; John Sperling, who provided the original money behind pet cloning; and Peter Thiel, whose largesse has favored the Methuselah Foundation, Humanity Plus, the Seasteading Institute and the Singularity Institute among others.

Which rather underscores the message that science funding is, at the least, at risk of being seriously distorted by the charitable efforts of a few very wealthy people. The Times piece estimated the combined fortunes of 18 of those mentioned as $390 billion. That is more than ten times the annual budget of the National Institutes of Health. Together, they could practically replace the NIH, and they are already "terrifically important," as NIH director Francis Collins admits.

Bill Gates has been signing up lesser billionaires to pledge to give away most of their fortunes; he has about 100, says the Times, pledging to give away over $125 billion. Among the goals: eradicating diabetes; vanquishing cancer; maintaining the competitive edge of American science.

Without wishing to look gift horses in their mouths, it's nonetheless easy to criticize these mostly elderly men for trying to stave off aging (Larry Ellison, the Google guys) or even seeking immortality (Thiel). And it may be understandable that they seek cures for their own prostate cancer (David Koch, Michael Melkin) or their children's diseases (Eli Broad, among others) or the Parkinson's that Sergey Brin may fear is looming. But there is a bigger distortion, and a harder one to counteract: the focus on technology and on tangible structures in general – buildings, computers – rather than on social processes and values, and the way we implement them through government.

Another article in the same newspaper, on the same day, described the "longevity gap" between Fairfax County, Virginia, and McDowell County, West Virginia. Fairfax is rich, with a median household income of $107,000; McDowell has a median income about one-fifth as much ($21,574). Men live 18 years longer, on average, in Fairfax; women, 12 years longer.

As a society, do we want to do something about that?

Genomics is important science, and Crispr technology may eventually be useful. But high-tech personalized medicine, if and when it appears, is almost certainly not going to benefit the residents of McDowell County, or any area of generalized poverty, in the short or even medium term. Well-directed interventions based on current medical knowledge, however, might.

Funding issues are bubbling to the surface, in part because of continuing pressure to cut government spending. Corporate funding of research is increasing; a March 19 article in Nature argues that this is a good thing (though many are wary). In the UK, some scientists are expressing concern that too-specific grants may hinder innovative science. And Craig Klugman, at Bioethics.net, warns about the effect of "the new patrons of science" who demand practical results:

The challenge for scientists is that funding is in many ways less assured than with the federal grant system. If a patron does not like what comes out of the lab, becomes disenchanted with a person, becomes interested in different issues, experiences a decrease in wealth, or is tired of waiting for results, the money can dry up over night.

Previously on Biopolitical Times:






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