It is difficult to understate the importance of genetic information, it provides insight to one’s heritage, current health status, and the future of their children. Equally as important is genetic autonomy, the ability to control how genetic information is used. One of the most prominent violations of genetic autonomy in history is the eugenics movement. The eugenics movement experimented on, sterilized, and at times euthanized individuals deemed “undesirable” by eugenicist academics. According to Npr.org, 7,000 people were forcibly sterilized in North Carolina alone between 1929 and 1976.
The eugenics movement was an attempt at population control of people deemed to be unfit to live and reproduce in society. The movement justified their efforts scientific research, resulting in government policies that forced sterilization and institutionalization. Biology teacher Kimberly Manning, debunks that myth.
“We are 99.9 percent the same…. You have people of every diversity, or every race, who are of value who have shown that through their culture and their actions,” Manning said. “But to scientifically say that you have one group that is superior to another, there is no scientific basis for that.”
In order to rectify the legacy of eugenics, the North Carolina Department of Administration enacted a compensation program. As of 2013, victims of eugenics were provided the opportunity to file claims to receive $40,000 in a three part payment, the last of which was delivered in February.
However, not everyone who filed a claim received compensation. According to the Winston Salem Journal, the families of the victims were unable to inherit payment because the victims had to be alive on June 30, 2013, in order to qualify. This resulted in a four year court case in which the plaintiffs claimed the date of qualification was arbitrary and unjustly denied them compensation. Eventually the court sided with the Department of Administration, ruling that the law in no way implied that the heirs of the eugenics victims were entitled to compensation.
Autonomy over one’s genes and genetic privacy is also prevalent in the debate surrounding the companies that use genetic information to provide customers with information about their ancestry. Companies such as 23andMe and MyHeritage have adopted policies to prevent law enforcement and insurance providers from accessing this information without customer consent, although such policies are not entirely comprehensive. According to the Washington Post, customers cannot withdraw data if it is already being used by researchers, and the companies cannot notify customers if their information is accessed by law enforcement with a gag order.
Only recently has the public become aware of the value of genetic information. Increasing knowledge of eugenics and genetic autonomy have begun to set a trend of holding government and private interests accountable for genetic privacy.
By: Trinity Casimir, Staff Writer