North Carolina and Genetics: From Sterilization to Research Subjects

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?

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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.