North Carolina and Genetics: From Sterilization to Research Subjects
Posted by Victoria Massie, Biopolitical Times guest contributor on August 7th, 2014
|Elaine Riddick is one of North Carolina's sterilization survivors|
Willis Lynch says the nurse asked him to sing her a song as she slipped the mask over his face. It was the serenade of lifetime, but it would be years before Lynch learned that this song slipped him into cutting the ties that could bind him to a future generation of his making.
In 1947, at the age of 14, Lynch was one of an estimated 76,000 people who were forcibly sterilized through the state of North Carolina’s selective sterilization program, which ran from 1929 to 1974. It was a program that, according to pamphlets, aimed to protect the broader state’s citizenry from the burdens imposed by those it identified as “moron,” “feebleminded,” “(mental) defectives,” and/or “a person of little intelligence.”
These categories allowed the state to codify and target the sterilization of those who did not fit its profile of an ideal citizen: the poor, people of color, people with disabilities, and even victims of rape who became pregnant. The assumption was that all citizens had a duty to protect the parenting of “a healthy, normal baby,” and that those targeted for sterilization should voluntarily give up their reproductive rights.
In reality, people often found themselves forced to choose between being released from state institutions and receiving welfare benefits, or losing their right and their ability to have children. Under the sterilization program, voluntary surrender was a cover for an insidious ultimatum. In other words, North Carolina – like more than 30 other states with laws allowing eugenic sterilization – found it more efficient to deny the possibility of future generations to certain people, rather than attend to the structural, socioeconomic and political issues that make poverty, racism and rape not only possible but normal.
North Carolina’s history of sterilization has come to the surface this summer as the state began accepting claims from those who were involuntarily sterilized. This step toward offering compensation to victims and their families made North Carolina the first state in the country to do so.
And yet in spite of this major symbolic victory, Lynch’s all-too familiar song lingers, harmonized now to the tune of Kannapolis citizenry turned into human research subjects in the name of bio-banking.
“Sequenced in the U.S.A.”
Located on the outskirts of Charlotte, Kannapolis was a town once known as the largest towel manufacturer in the world. Most of those who lived in Kannapolis depended on Cannon Mill as the linchpin of the local economy. But a little over a decade ago, the town experienced the largest single layoff in the state’s history as the mill’s doors were permanently closed.
Since then, Kannapolis has become a hub for biotech research and innovation, in part due to a billion-dollar investment by Los Angeles real estate magnate and businessman David H. Murdock. According to a revealing article in The Pacific Standard called “Sequenced in the U.S.A.: A Desperate Town Hands Over Its DNA,” Murcock “stepped in to transform Kannapolis into a $1 billion mecca for biotechnology and life sciences research,” building a 350-acre research complex on the site of the demolished Cannon Mills.
The town’s former blue-collar laborers aren’t the kind of people who will find jobs at Murdoch’s high-tech institute. But they now find themselves bombarded with “opportunities” to provide urine and blood samples for its research efforts, including one called the MURDOCK Study. At schools, churches, and health care facilities, there is a very high likelihood that recruiters will be waiting under a tent to collect local biological material so that researchers can connect family histories to genetic sequences in the pursuit of personalized medicine.
But despite the fact that the local raw material may help biotech ventures make billions of dollars, guess how participants are compensated: a $10 gift card to WalMart.
The argument can be made that participants are at least getting some form of compensation for their contributions to the study, and some told the Pacific Standard that they are taking part in the study “for the good of their grandchildren and future generations.” But questions remain.
Can one consider consent to be informed when Kannapolites are being invited to relinquish their biological material for use in a future that has yet to come and may never come to pass, that cannot be predicted, and that is only as speculative as the venture capital supporting the biotech industry? Shouldn’t we be given pause by the legacy of Henrietta Lacks, an African American woman whose cells were taken without her consent to produce the first known human immortal cell line for medical research?
According to international consensus, research subjects are to be expected to know the “nature, duration, and purpose” of experiments in which they take part. The MURDOCK study has no temporal end in sight, and the nature of the projected research has yet to be made clear. The assumed public good may turn out to be one that much of the public cannot share.
Despite assurances by researchers that participants can withdraw from the study at any time, once blood and urine is taken, the material and information is out of their control. Participants are informed that they can make no claims to the benefits of the commercial products that may be made possible by the biological materials and information they provide.
The state of North Carolina once promoted eugenic sterilization as a technique to protect the public. Today, it hosts private-public a biotech industry effort to build lucrative biobank-based ventures. Are there similarities to which we should be paying attention?
Victoria Massie is currently a graduate student at UC Berkeley, pursuing a Ph.D. in Sociocultural Anthropology with a designated emphasis in Science & Technology Studies. Her research examines the transnational circulation of genetic ancestry testing information by African-Americans, particularly between (but not exclusive to) the United States, Cameroon, and Sierra Leone. She is also a poet, and a summer intern at the Center for Genetics and Society.
Posted in Bioethics
, Biopolitics, Parties & Pundits
, Biotech & Pharma
, Human Rights
, Personal genomics
, Reproductive Justice, Health & Rights
, Sequencing & Genomics
, The States
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More Heart-Wrenching Chapters in the Baby Gammy Story
Posted by Jessica Cussins on August 7th, 2014
Headlines around the world have broadcast the heart-wrenching story of the Australian couple who took home their healthy baby daughter and left her twin brother with his Thai surrogate mother after learning that he had Down syndrome. Thousands of news articles have been written since the news was first reported last week, and conflicting versions of what happened have not yet been fully resolved. By all accounts, the story of baby Gammy has gotten more shocking every day.
After several days of media attention, the Australian commissioning parents were identified. Shortly thereafter, court documents were discovered revealing that the babies’ father has been convicted of 22 child sex offences in Australia, including offenses against a girl who was seven years old and two more under thirteen.
And now, the couple seems to have vanished. Child protection services tried to find them without luck, and their dog was taken away from their empty house by animal protection officers.
Apparently no formal contract was ever signed between the commissioning parents, the surrogacy agency, and Pattaramon Chanbua, the woman they paid to carry and deliver their babies. The head of the unidentified Bangkok fertility clinic could now face jail time. More shockingly, 21–year-old Chanbua, who has been caring for Gammy since he was born, could also face jail time for her involvement with commercial surrogacy, despite claiming that she never knew commercial surrogacy is illegal in Thailand because she saw so many websites offering it online.
Thankfully, Gammy is in good hands for now. More than $230,000 has been raised via GoFundMe by the organization Hands Across the Water for the life-saving health care Chanbua would not have been able to afford on her own.
If there is any silver lining in this heart-wrenching debacle, it is that it is now clearer than ever that regulation and oversight of cross-border surrogacy is sorely needed to prevent more cases of neglect and harm to women and children.
Previously on Biopolitical Times:
Data Yearning to Become Expensive Information
Posted by Pete Shanks on August 6th, 2014
Several initiatives have surfaced recently that hope to move genomics more effectively toward medical applications. They are trying to link genomic and phenotypic data, establish baselines for health, and use computational techniques to move the science forward. Some seem more promising than others; even discounting for self-promotion, Craig Venter may be leading the pack.
The highest-profile and clearly most political announcement was made in the UK by Prime Minister David Cameron on August 1. It firms up the proposals for Genomics England, which plans to sequence 100,000 genomes — 40,000 from patients suffering from cancer and other rare diseases; 35,000 from their relatives; and 25,000 from the cancer cells themselves.
The broad outlines of this are not new, and were cogently critiqued by Helen Wallace of GeneWatch UK a couple of months ago, on grounds of effectiveness (dubious) and privacy (very worrying, and addressed even by The Observer). Commercial exploitation is also a concern. The project is a partnership between the government, the Wellcome Trust, and Illumina, which will perform the sequencing. Cameron is pushing it hard:
This agreement will see the UK lead the world in genetic research within years. As our plan becomes a reality, I believe we will be able to transform how devastating diseases are diagnosed and treated in the NHS and across the world.
In the US, there has been a more surprising, though much smaller-scale, development: The embattled direct-to-consumer testing company 23andMe has scored a $1.4 million grant from the National Institutes of Health. It’s pin money to the Googleplex, of course, but some kind of validation. This will help them refine web-based surveys, collect phenotypic data, dip the company’s toes into whole-genome screening, and accomplish the:
Enablement of external non-23andMe researchers to access aggregate de-identified data from the 23andMe database to further accelerate the pace of human genetic research.
Back at the mothership, Google X (the “semi-secret" research arm that works on everything from self-driving cars to Glass) has had another bright idea: They will work out what is normal for humans. The Baseline Study is in its early days but involves "70-to-100 experts from fields including physiology, biochemistry, optics, imaging and molecular biology.” They’ll study 175 (and, later, more) people in great detail (partly using wearable devices, including glucose-monitoring contact lenses), and of course they are being, that is, will be, careful:
Baseline will be monitored by institutional review boards, which oversee all medical research involving humans. Once the full study gets going, boards run by the medical schools at Duke University and Stanford University will control how the information is used.
The genomics research establishment is somewhat skeptical, it seems. Yaniv Erlich of the Whitehead Lab at MIT tweeted:
Breaking: Google moonshot study (that does exactly what has been done in genomics for years)
Daniel MacArthur, who has been working in the field for a long time, and is currently based at Harvard, the Broad Institute and Massachusetts General Hospital, took an even less charitable view in several tweets, including:
Late to this, but calling this Google study a moonshot just absurdly devalues that term …
I confidently expect Google to be AT LEAST as successful in life sciences as they have been in social media
Ouch. For more nuanced commentary, see George Dvorsky at io9 and Kenrick Vezina at the Genetic Literacy Project, among others.
But Craig Venter is ahead of them all, at least in his own analysis. And he has hired one of Google’s hot shots, Frank Ochs, who basically made Google Translate work. According to MIT Technology Review:
Venter says that he’s sequenced 500 people’s genomes so far, and that volunteers are starting to also undergo a battery of tests measuring their strength, brain size, how much blood their hearts pump, and, says Venter, “just about everything that can be measured about a person, without cutting them open.” This information will be fed into a database that can be used to discover links between genes and these traits, as well as disease.
That’s only the start. The goal is a million human genomes sequenced by the end of the decade. Venter remains absolutely committed to the DNA-programming view of humanity, but appropriately humble about the lack of advances over the last decade or so:
I’ve had my genome for 15 years, and there’s not much I can learn because there are not that many others to compare it to.
That is going to change.
Previously on Biopolitical Times:
Surrogate Mother Cares for Baby Abandoned Because of Down Syndrome
Posted by Sonia Allan, Biopolitical Times guest contributor on August 4th, 2014
|Thai surrogate mother Pattaramon Chanbua holds baby Gammy|
The story of baby Gammy and his "surrogate" mother, Pattaramon Chanbua, hit headlines around the world last week. Six-month-old Gammy, born with Down syndrome and a congenital heart condition, was conceived as a result of a commercial surrogacy arrangement between Chanbua, a Thai national, and an unknown Australian couple who abandoned him at birth.
Chanbua, a 21-year-old mother of two other children, was offered 350,000 baht (approximately US $11,000) to be a surrogate. She told an Australian ABC reporter that her family was struggling to pay off debts when she and her husband agreed to the arrangement:
The money that was offered was a lot for me. In my mind, with that money, one, we can educate my children, we can repay our debt.
When she became pregnant with twins, Chanbua was promised an additional 70,000 baht (approximately US $2000). Then, at four months into the pregnancy, doctors discovered that one of the babies had Down syndrome.
According to reports, the Australian commissioning couple (the genetic parents of the children) said they did not want a baby with Down syndrome. “They told me to have an abortion but I didn’t agree because I am afraid of sin,” Chanbua reports.
An abortion would have been illegal under Thai law unless the mother’s health was at risk.
On the birth of the children, Chanbua was paid the original amount, but not the extra money. The Australian couple took Gammy’s twin sister home with them, and left Chanbua and her family to care for Gammy. This put her in a desperate situation, unable to pay for his medical needs.
The Thai newspaper Thairath published Gammy's story last week, and an online campaign to raise money for his treatment was launched shortly afterwards. The story has been met with outrage and compassion from hundreds of people who have now donated close to $200,000.
A spokesman for Australia's foreign affairs department has expressed "concern" about the reports and said it is in consultation with Thai authorities over surrogacy issues.
The Thai government quickly announced that it will now be illegal to pay for surrogacy in Thailand, and that the practice can be undertaken only in circumstances in which the surrogate is related to the intended parents, and the intended parents are medically infertile. People who remove children from Thailand without the approval of the government would also be subject to Thai anti-trafficking laws.
Some agencies and lawyers who facilitate surrogacy arrangements have responded primarily with concern that hundreds of would-be-parents may be left unable to satisfy their longing for a family. They suggest that it would be better to permit commercial surrogacy in Australia.
These responses stand in stark contrast to the many people who see Baby Gammy’s plight as highlighting the extent to which commercial surrogacy arrangements can exploit and commodify women and children. Chanbua entered into the arrangement because her family was desperate and in debt. This was no "win-win" situation, whatever the outcome: rather, it was one in which surrogacy brokers and a relatively wealthy Australian couple took advantage of another family’s dire circumstances. Baby Gammy’s situation only serves to emphasize the extent to which money influenced and drove the transaction.
In my country, Australia, all states and territories prohibit commercial surrogacy arrangements. New South Wales, Queensland and the Australian Capital Territory also prohibit travelling to other countries to engage in such practices. The Australian government lists such prohibitions in its reports to the United Nations as forming part of our laws against the sale and trafficking of children and of meeting our obligations under international law. Some people who are travelling abroad and engaging in commercial surrogacy are breaking laws.
Should Australia as a consequence of such incidents now change its laws to permit commercial surrogacy? I would respond to this question with a resounding “no.” While careful regulation of altruistic surrogacy arrangements allows an alternative avenue to having a family, introducing profit into such arrangements places women and children at risk. Baby Gammy is but one example of this. His twin sister—who may never know that he exists or the circumstances of her birth—is another. Pattaramon Chanbua is a third.
The majority of nations that have established laws on surrogacy prohibit commercial arrangements. However, because a few permit surrogacy (for example, India, Guatemala, Russia, the Ukraine, and some U.S. states), brokers, lawyers, and clinics continue to encourage people wishing to have children to "forum shop" to "realise their dreams.” The result has too often been complex situations for children, commissioning person(s), and women working as surrogates. In some cases, problems have arisen about legal parentage and citizenship for children; this has been the primary focus of many recent news stories.
But we should not lose sight of the significant international human rights issues reflecting social, economic and racial disparities between surrogate mothers and commissioning person(s), involving the exploitation and commodification of women and children. These are clearly illustrated by the baby Gammy case.
One Australian surrogacy facilitator referred to the “market” in remarks about baby Gammy that were reported in a major newspaper. The use of this term is telling in itself. While this case has raised the need for further discussion, let me suggest that the discussion should not address how to support such a market, or to introduce or broaden the market to Australia. Rather, it should focus on how to protect the rights and welfare of children and women in line with established global human rights standards. In my view, this includes taking a strong stance against commercial surrogacy.
Sonia Allan is Senior Lecturer in Law at Macquarie University. Her research focuses on wide-ranging health-related ethical, legal, human rights and regulatory issues. She has worked extensively in advocating for women and children in situations in which assisted reproduction has been used and researching the regulation of new biotechnologies. Her latest major work is The Patient and the Practitioner: Health Law and Ethics in Australia, co-authored with Meredith Blake (2014).