Eugenics and Genetics in the News in 2013

Happy New Year! As another year ends, I wanted to take a look at three news stories involving eugenics and genetics in 2013 that you may have missed.

North Carolina Compensates Sterilization Victims

In July, North Carolina became the first state to offer monetary compensation to victims of its compulsory sterilization program. The Eugenics Board of North Carolina operated the state’s eugenic sterilization program from 1929 to 1974.  After the North Carolina Supreme Court ruled the Sterilization Act of 1929  unconstitutional on the grounds that there was no provision in the law for notice of hearing or right of appeal, the state enacted a new law in 1933 that included these provisions. The sterilization law was intended for individuals who were “feeble-minded” and “mentally diseased who would be likely to transmit their defects to their children or who are entirely incapable of rearing children.” Moreover, individuals could be sterilized if it was deemed to be “in the interest of the mental, moral, or physical improvement of the patient or inmate or for the public good.”[1] Under the authority of the North Carolina Eugenics Board over 7,600 people (85 percent of the procedures were performed on women) were sterilized over four decades of its eugenic program.

In 2002 Governor Mike Easley issued a public apology to the victims and their families, stating that it was “a sad and regrettable chapter in the state’s history.”[2] The next year Easley approved restitution payments. However, it took over a decade for the North Carolina General Assembly to finally approve compensation for the remaining victims of the sterilization program. Governor Pat McCrory signed into law the $10 million compensation to be divided among the victims as part of the state’s $20.6 billion budget. Verified victims will be issued a share by 2015.[3] The North Carolina State  Center  for  Health  Statistics  estimated  in  October  2010  that  2,944 victims of North Carolina’s Eugenics Board program could still be alive. As of this past November, according to TribTown.com, North Carolina officials have mailed compensation paperwork to 800 people who have previously identified themselves as victims of the state’s forced sterilization program so that they can verify their eligibility for one-time payments from the $10 million compensation fund.

North Carolina’s announcement that it would compensate sterilization victims came on the heels of a report issued by the Center for Investigative Reporting (CIR) disclosing that physicians, under contract with the California Department of Corrections and Rehabilitation, performed tubal ligations on nearly 150 female inmates while they were housed at two of the institutions under its authority. Between 2006 and 2010 the California Institution for Women in Corona and the Valley State Prison for Women in Chowchilla oversaw the sterilization of at least 148 women without the required state approval. Fellow Nursing Clio writer, Adam Turner, and I wrote a two-part post responding to this report. Though as Adam pointed out, it’s not entirely clear whether the inmates were sterilized because they were considered to biologically “defective,” Dr. James Heinrich, Valley State’s OB-GYN, stated that the money paid to the physicians who performed the procedures was minimal “compared to what you save in welfare paying for these unwanted children—as they procreated more.” The incentive to save taxpayers money by restricting the reproduction of individuals deemed “unfit” has long been a core justification by eugenics advocates to enact “negative” eugenic measures. Just one example of this can be seen in a North Carolina report to support sterilization which states that by the end of 1922 one “feeble-minded” family had cost the public at least $20,000.00.  According to the report, for around $100 the father and mother could have been sterilized, saving the taxpayers a good deal of money.

 23andMe

In early August the “personal genetics” company 23andMe launched its first television advertising campaign, Portraits of Health. According to the 23andMe website, this campaign focused on “educating consumers about how understanding their DNA can help them make more informed and proactive health decisions.” The company hoped to appeal to individuals seeking to who sought information about their health “in order to develop a personalized plan to proactively prevent health issues so that they can live a longer, healthier life.” All one had to do to obtain their own personalized genetic profile was send a sample of saliva and wait for the results. In late 2007, 23andMe launched their company with a mission to help “individuals understand their own genetic information through DNA analysis technologies and web-based interactive tools. The company’s Personal Genome Service^® enables individuals to gain deeper insights into their ancestry and inherited traits.” In just three and half years, the company proudly announced that its database had grown to include the DNA data of more than 100,000 people.

http://www.youtube.com/watch?v=HF0DJ3j3THA

On November 22, the U.S. Food and Drug Administration (FDA) ordered the company to stop marketing their Personal Genome Service. The FDA stated in its letter to 23andMe that it considered the Personal Genetics Service (PGS) as being “intended for use in the diagnosis of disease or other conditions or in the cure, mitigation, treatment, or prevention of disease, or is intended to affect the structure or function of the body.” Because 23andMe promoted its  service as a medical diagnostic tool, it must have approval from the FDA for those particular uses. The FDA stated that their concern involved 23andMe providing “health reports on 254 diseases and conditions,” including categories such as “carrier status,” “health risks,” and “drug response.” Specifically, the FDA was concerned with people’s potential reactions to false positive or false negative results for high-risk indications. However, the company can continue to sell its genetic test with certain restrictions. In response to the FDA’s warning letter, 23andMe repackaged their service solely to “discover your ancestral origins and lineage with a personalized analysis of your DNA,” and promised to discontinue its consumer access to health-related data pending completion of FDA review. So, though 23andMe is not promoting their PGS as a method of diagnosis for potential hereditary problems, they continue to sell ancestry-related information and raw genetic data as a way for customers to have access to their genetic profiles and as a genetic genealogy tool.

Genetic genealogy is an example of a consumer driven technological advance illustrating how the public shapes how scientific information is utilized. The idea of having a database as a “clearing-house for data concerning bloodlines and family traits” dates back to the eugenics movement in the early twentieth century.[5] Leading American eugenicist Charles Davenport envisioned this same type of warehouse of “human pedigrees” of all families with thousands of traits sorted, categorized, and stored for possible “use by the state … in its work of regulating human reproduction.”[6] While 23andMe doesn’t use the overt language of eugenics, its goal of compiling a database full of human DNA profiles (23andMe also reserves the right to use your personal information—including your genome) is reminiscent of Davenport’s dream. In addition, whereas early-twentieth century eugenics focused on the primacy of the improved aggregate hereditary endowment of the overall population, the message of 23andMe is about individual knowledge of one’s own genetic material. With this personalized information, an individual can make health-related decisions accordingly. The problem with this is that it’s much more complicated than just knowing the “inherited traits which are marked in an individual’s genetic code.” As historian Nathanial Comfort points out, 23andMe  “seems to promise self-knowledge” by telling you what your genome “says about you.” However, making use of that “knowledge” based on the idea that science is comprised of “fixed” and “true” facts is an entirely different matter.

HIV Used to Cure Genetic Disorders and Cancer

Italian scientists reported this year that by harnessing gene therapy vectors from the human immunodeficiency virus (HIV), they were able to cure two severe genetic diseases, metachromatic leukodystrophy and Wiskott-Aldrich syndrome. Dr. Luigi Naldini and his team from Italy’s San Raffaele-Telethon Institute for Gene Therapy (TIGET) successfully treated six children suffering from these diseases.

Researchers explained that HIV works by infecting and altering a cell’s DNA, but researchers realized that if they could similarly “infect” a malfunctioning cell with the genetic material it was missing, they could, in effect, cure some genetic diseases. Naldini and his team realized that by stripping HIV of its harmful genetic information, they could take advantage of its delivery system and create a highly efficient vehicle for getting treatment directly into the DNA of cells.[7] According to Naldini,

  “The virus is like a delivery truck, but in this case, all the spoiled packages that would normally cause HIV infection have been removed and replaced with packages containing genetic information that is key  to treating disorders, like metachromatic leukodystrophy and Wiskott- Aldrich syndrome, in which a vital piece of DNA is missing.” 

In addition, the simultaneous announcement that researchers in the United States had used a similar technique to fight chronic lymphocytic leukemia (CLL) fueled the headline, “Doctors Take A Long Shot And Inject Modified HIV Into A Dying Girl.” Dr. Carl H. June and his team from the University of Pennsylvania reprogrammed T-cells of cancer patients to attack the disease. According to the report published in the New England Journal of Medicine, both patients were in complete remission after initial treatments. However, after approximately two months of treatment, one patient experienced a relapse.

http://www.youtube.com/watch?v=h6SzI2ZfPd4

While these are tremendous breakthroughs in genetic technology, they sparked a public response, based in large part, on misconceptions.  How this type of scientific information is put forth for public consumption is crucial. At this time when we have immediate access to information, it becomes increasingly important to understand the implications of scientific advancements as they intersect with society. The utmost care should be taken in how scientific knowledge is disseminated to the public. How that knowledge shapes, and is shaped by, society informs the way scientific “facts” are constructed as standardized objective information available for public use.