Steve May: Vermont’s eugenics history demands public reckoning – vtdigger.org

Editors note: This commentary is by Steve May, a former member of the Vermont AFL-CIO executive board and past vice president of the Champlain Valley Central Labor Council. May is also currently an elected member of the Richmond Selectboard and the founder of The Forum on Genetic Equity.

A century ago, Americans led in what was then considered to be a promising area of scientific research. It had been used to bridge the gap between research and the conventions of society to explain why certain subsets of civilization were predisposed towards certain intellectual pursuits or physical ones. That area of scientific research has a name: eugenics. Eugenics involved attributing features about race and ethnicity to ones biology or genetic profile. Most Americans and Vermonters are aware that this genetics-driven view of the world was at the core of Hitlers political ideology. Biology and politics were to have been on center stage at the 1936 Berlin Olympic Games. The games which were designed largely to be a propaganda platform for the success of eugenics was foiled when African-American sprinter Jesse Owens won the 100-meter sprint over Hitlers pure-blooded Aryan athletes running for the motherland. It would be another decade before the theories of ethnic purity would be discharged at the business end of Allied war efforts on European battlefields.

As such, Charles Murray, in coming to Middlebury and putting his beliefs front and center, has done us all a tremendous favor. Murrays visit allows us to revisit this dark and largely forgotten chapter of our common history. He is in fact our useful idiot. Across this Vermont visit and his career-long support for the use of race and biology to address data and societal trends, Murray perverts the relationship between that which is ascribed to nature and that which is ascribed to nurture to prop up the basest of all views of the human condition in its rawest form. Murrays research and writings permits us to look at not only at his own half baked ideas, but also at the modern-day pre-cursor to genotyping, called eugenics.

While we as Americans tend to associate eugenics with Hitler and the Nazis, it is actually a cadre of Americans researchers who actually created the field as an area of medical and scientific inquiry. One of the leaders of the field was on faculty at UVM. His name was Dr. Henry Perkins, and he was a professor of zoology. In 1925, he organized the Eugenics Survey of Vermont as an adjunct to his heredity course. Its mission was threefold: eugenics research, public education on their findings, and support for social legislation that would reduce the apparent growing population of Vermonts social problem group. Most notorious of these reforms was Vermonts 1931 eugenic sterilization law, A Law for Human Betterment by Voluntary Sterilization. Vermont was ultimately one of more than 27 states that had a forced sterilization program. Ultimately native peoples including the Abenaki, people with intellectual and physical disabilities and certain ethnic populations, including Irish and French Canadians immigrants, were among those targeted for forced sterilization in the early part of the 20th century by researchers associated with Perkins and his program.

The present-day heir to eugenics and its dark legacy must be seen as the potential for misappropriation of genetic material and information.The present-day heir to eugenics and its dark legacy must be seen as the potential for misappropriation of genetic material and information.

Murrays visit has served to return our gaze to a period of time which may be largely unknown to most Vermonters these events in fact did happen, and to some extent they happened in our name. Certainly the seal of authority in the shape of the State of Vermont granted these activities permission to occur. It is appropriate that we consider the legacy of our collective behaviors.

The present-day heir to eugenics and its dark legacy must be seen as the potential for misappropriation of genetic material and information. We are awash today in genetic information and personal health information data, all of which is considered privileged in one way or another. The advent of the age of big data means that there is an amazing amount of biomedical information available and it is prudent that we take all reasonable steps to safeguard that information.

Our history, heritage and common humanity all demand a full and thorough accounting publicly for these events. This can only be seen as the very beginning of what is necessary to address this chapter on behalf of all Vermonters. Efforts to pervert the scientific method and misappropriate genetic information demand a thorough reckoning beyond an apology or even the act of convening a truth and reconciliation process. We collectively need to safeguard the genetic privacy rights of all Vermonters. Currently, the right to privacy is an implied right in general and only applies when a grant of authority is made with regard to a specific area or interest under our system currently. FERPA the Family Education Rights and Privacy Act for example applies only to education and education policy. A grant of authority with regard to privacy issues is granted only within the scope of that given area (in this case education) broadly to all who are specifically noted within the scope of the authority granted within the rule or statute.

The University of Vermont, the Legislature and the State of Vermont have never acknowledged their roles in this episode or apologized for its larger participation in this field of inquiry or its impacts on Vermonts citizens. The one past effort of some significance which attempted to foster debate and reconciliation in Montpelier was headed by Rep. Anne Donahue of Northfield. Sadly, no formal apology or action resulted from that effort in 2010. Persons and groups affected by this dark legacy deserve a formal apology. An act which it appears has never been issued by our Legislature or our institutions, all of which have failed these patients and their antecedents. These neighbors, friends and family members were targeted in a manner that can only be considered to be systemic, and often they were targeted either without their actual awareness or their ability to consent. In total, this period demands a much fuller accounting. A public reckoning through a truth and reconciliation process designed to more completely address past misdeeds associated with the Vermonts eugenics experiments could serve as an important model to facilitate healing, advocacy and social action as needed.

A commitment to treat personal health information and genetic profiles with the highest level of regard and care practicable should be the stated goal of the people and state of Vermont in light of the eugenics work that happened a century ago. Vermont in light of this history should aspire to set the gold standard in caring for genetic and personal health information. It is the least we can do. A comprehensive genetic privacy act enacted at the state level here in Vermont would better serve to protect Vermonters in this emerging age of big data. In light of these historical challenges to individual genetic privacy rights, Meaningful reconciliation with this history is essential as we move more deeply towards an age of personalized medicine.

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Steve May: Vermont's eugenics history demands public reckoning - vtdigger.org