In my previous two articles investigating the Precision Medicine Initiative (“The Precision Eugenics Initiative” Parts 1 and 2), I analyzed the connections between the PMI Working Group’s transhumanistic research projects, crypto-eugenics organizations such as the Bill and Melinda Gates Foundation, and corporations linked to the Nazi Eugenic Reich, such as GE, Merck, and Bayer. These correlations raise questions about the expressed mission of the PMI.
According to a White House “Fact Sheet,” the PMI will data-mine over a million Americans as case studies in order to fast-track customized medical “treatments that are tailored to specific characteristics of individuals, such as a person’s genetic makeup, or the genetic profile of an individual’s tumor.” But the newly revised informed consent rules established by the National Institutes of Health Genomic Data Sharing (GDS) Policy allow for “broad” consent that enables medical researchers to use data sets from human subjects without fully disclosing how the data will be used in future studies. Hence, the GDS Policy creates backdoors for the use of PMI biodata to develop the Working Group’s transhumanistic R&D, even though such neo-eugenic R&D is not overtly touted in the PMI’s public mission statement.
The Loopholes of Broad Consent and the New GDS Policy:
In a nutshell, the signing of “broad” consent stipulates that biodata can be utilized for new research projects without participants signing re-consent, so long as an ethics committee deems that the new projects will not utilize their biodata in ways that go beyond the broad scope of the original research to which consent was given.
However, according to an article from the European Journal of Human Genetics, some scholars “reject labelling broad consents to biobank research ‘informed’, as aspects of future research projects are today often unspecified and to some extent unforeseen.” These scholars contend that broad consent encompasses so many unidentified variables that they “render ‘informed broad consent’ to biobank research a contradiction in terms.” Simply put, it is impossible for participants to be “informed” about future research implications that are not identified prior to signing broad consent forms. “Taken even further,” the journal article reports, “some claim that broad consents ‘… hinder donors from exercising fundamental rights and freedoms’.”
Indeed, critics of the new GDS Policy “suggested that NIH permit alternative forms of informed consent other than broad consent, such as dynamic consent or tiered consent.”
To be sure, broad consent is not a blank check, so to speak. Yet regardless of any restrictions on the uses of broad consent research, the GDS Policy states that it “included an exception for ‘compelling scientific reasons’ to allow the research use of data . . . for which research consent was not obtained.” Furthermore, the GDS Policy states that “NIH has the authority to establish additional policies with expectations that are not required by laws or regulations but advance the agency’s mission to enhance health, lengthen life, and reduce illness and disability.” To simplify, the new GDS Policy authorizes PMI researchers to use genomic data for any “exceptional” purposes that the NIH deems to be for the greater good of healthcare progress—even if participants do not consent.
In sum, the NIH GDS Policy’s loopholes for abandoning all consent requirements open doors for the PMI Working Group’s nexus of crypto-eugenics enterprises to utilize PMI biodata, under color of law, for neo-eugenics/transhumanism R&D. Indeed, critics “asserted that the draft GDS Policy did not do enough to protect against the misuse of the data . . . They suggested that . . . the Policy for data users should be ‘required’ rather than ‘expected’ and should state that there will be penalties for noncompliance with the Policy and rigorous sanctions for the intentional misuse of data.”
A History of Bioethics and Consent Violations:
Such concerns about the misuse of biodata are not unwarranted. According to a blog article posted on the Stanford Law School’s Center for Law and Biosciences, members of a Native American tribe known as the Havasupai signed “broad” consent in the 1990s for scientific researchers at Arizona State University to examine their blood DNA samples to study ”gene variants associated with diabetes.” However, “[i]n 2003, the Havasupai learned that the analysis of their blood samples had not been limited to diabetes research. The samples were also used to study schizophrenia, the tribe’s origin, and their degree of inbreeding.” The tribe pressed charges against ASU for informed consent violations, and “the ASU Board of Regents agreed to pay $700,000 to 41 members of the Havasupai tribe and return the blood samples.” It is keen to note that the Havasupai’s genomic data was surreptitiously used to study hereditary aspects of the tribe’s bloodlines which are of typical interest to eugenics: inbreeding practices and ancestral origin.
Newsweek reports a similar lawsuit was filed in 2008 against “the Texas Department of State Health Services (DSHS) and Texas A&M University for using stored [infant] blood spots for undisclosed research purposes without parental permission. Previously, Texas had destroyed samples soon after newborn screening, but the state changed its rules in 2002 without notifying parents and began donating stored samples to researchers.” The lawsuit was resolved with an out-of-court settlement that mandated the DSHS to publicly display on its website every research project that received bloodspot samples from the DSHS. Subsequently, it was revealed that 800 newborn bloodspots were “loaned” to “the U.S. Armed Forces Institute of Pathology to help get its new forensic database up and running. The 800 spots were used to establish general reference points of variation among different ethnic groups.” It is keen to note here that these infants’ genomic data were used to draw correlations between ethnicity and pathology—in other words, correlations between race and health, which have been the central focus of traditional eugenics proper. It was also discovered that other bloodspot samples were “loaned” to pharmaceutical companies.
The Journal of American Physicians and Surgeons documents another recent example of apparent informed consent violations. According to this journal article, EPA research scientists violated the Nuremberg Code, or Common Rule, for bioethical human experimentation by “intentionally exposing human beings to various forms of concentrated [harmful] airborne particulate matter (PM)” without acquiring informed consent. Authors Steve Milloy, M.H.S., J.D., L.L.M., and John Dale Dunn, M.D., J.D., document that “[a]lthough EPA went through the motions of having its study subjects read and sign consent forms, the forms never mentioned that any exposure to PM could result in death within hours of the experiment.” After one test subject experienced “atrial fibrillation/flutter” during exposure to the EPA’s particulate matter, the American Tradition Institute Environmental Law Center sued the EPA for not informing research subjects of these mortal dangers. Despite the judge’s dismissal of the lawsuit, legal scholars such as Nathan A. Schachtman, J.D., Esq., P.C., have repudiated the ruling as “legally correct, . . . [yet] blandly devoid of any sense of ethical concern.” Indeed, in a congressional hearing, EPA administrator Lisa Jackson asserted that “[p]articulate matter causes premature death. It’s directly causal to dying sooner than you should” (qtd. in Schachtman).
But perhaps the most disturbing cases of alleged bioethics violations have been video recorded by investigative reporters at The Center for Medical Progress. In these recent undercover films, the CMP captures numerous Planned Parenthood employees discussing the harvesting and selling of aborted fetal tissues. It should be noted here that Planned Parenthood was formerly the American Birth Control League, a eugenics organization which was instituted by Margaret Sanger to target the eugenic genocide of African Americans through her “Negro Project” (Washington 195-202). Planned Parenthood’s alleged “manufacture” and sale of fetal tissues for stem cell extraction and other medical procedures resembles a nightmare akin to the dystopic eugenics in Aldous Huxley’s Brave New World.
These recent case studies alone demonstrate that  researchers will push the legal limits of broad consent when using genomic data;  controversial, or even illegal, use of genomic data has been used for secondary studies that fall under the spheres of eugenic research;  researchers will potentially disregard informed consent altogether; and  scientists may potentially break other bioethics laws in addition to disregarding informed consent. Altogether, this track record illustrates that unethical human experiments like the Tuskegee Experiments are not historical relics of a less civilized time in the distant past of our social evolution.
Surely, these broken rules are the exceptions, though. Yet even if such informed consent/bioethics violations are not business-as-usual, the probability for the PMI’s million-person human experiment to be a Trojan Horse for crypto-eugenics/transhumanism will be multiplied under the leadership of the current Director of the NIH, Francis Collins.
The Eugenic Legacy of the GDS Policy, the Human Genome Project, and Genomic Data-Mining:
As Director of the NIH, Collins effectively codified and legitimized the eugenic legacy of human experimentation in America when he brokered a deal with the Henrietta Lacks family to release the research rights to her “HeLa” cells. In Virginia in 1951, Henrietta’s “immortal” cancer cells were sampled and cultured without her informed consent. This bioethics violation was implicitly justified by Virginia’s state eugenic sterilization and segregation laws such as the Racial Integrity Act, which viewed African Americans like Lacks, and other non-white peoples, as genetically inferior or even subhuman.
It appears that the scientific breakthroughs from HeLa cell research have in some ways justified their nonconsensual usage in the eyes of Collins and the NIH, who drafted the new broad consent GDS Policy as a result of the HeLa cell negotiations with the Lacks family. This “for-the-greater-good” rationale should come as no surprise to those familiar with Collins’ affiliations with the crypto-eugenic Human Genome Project (HGP).
Before his Directorship at the NIH, Collins had become the Director of the HGP as successor to eugenicist James Watson, who co-discovered the double-helix structure of DNA. Before heading up the HGP, Watson took up the mantle of the Cold Spring Harbor Laboratory Directorship, which was originally held by eugenicist Charles Davenport, who collaborated with Nazi eugenicists at the International Federation of Eugenics Organizations (Black War Against the Weak 426).
Davenport’s Nazi-flavored eugenics were apparently passed down through the directorship to Watson. In an interview for Cold Spring Harbor Lab’s DNA Learning Center, Watson said he believes that Davenport’s eugenics were “compassionate.” Shortly after his HGP directorship, in a 1997 article entitled “Genes and Politics,” which was published by Cold Spring Harbor Press, Watson concluded that just “[b]ecause of Hitler’s use of the term master race, we should not feel the need to say that we never want to use genetics to make humans more capable than they are today. . . . If more intelligent human beings might someday be created, would we not think less well about ourselves as we exist today?”
Following this übermensch “logic,” Watson echoed his eugenic predecessor, Davenport, when he professed in a 2003 British television documentary that “stupidity” is a hereditary “disease” and should be eradicated through gene therapies “to help the lower 10 per cent.” In an interview with the Sunday Times, Watson also echoed Davenport’s racial-hygienist conception of intelligence when he criticized how “all our social policies are based on the fact that their [African] intelligence is the same as ours—whereas testing says not really.”
Apparently, the eugenic ideologies of Davenport and Watson live on through the institutional fabric of the HGP, which was absorbed into the National Human Genome Research Institute, where Collins’ directorship was succeeded by Alan Edward Guttmacher, who is the nephew of eugenicist Alan Frank Guttmacher. As documented in the history film Maafa 21: Black Genocide in 21st Century America, Alan Frank was the vice president of the American Eugenics Society as well as the president of Margaret Sanger’s eugenic Planned Parenthood. Alan Frank stated that “If you’re going to curb population, it’s extremely important not to have it done by the damned Yankees, but by the UN. Because, the thing is, then it’s not considered genocide.” Alan Frank’s eugenic legacy also lives on through the Guttmacher Institute, which is a Malthusian-eugenic population control nonprofit that is funded by the Bill and Melinda Gates Foundation.
From Henrietta Lacks in 1951 to the Havasupai in the twenty-first century, the use of human biodata for scientific research has continued to toe and even cross the bioethical lines of informed consent. Today, the new GDS Policy broadens and blurs those lines, and it even authorizes the crossing of those lines “for ‘compelling scientific reasons.’” Inasmuch as the PMI Working Group brings together a confluence of crypto-eugenics research, there will be ample opportunity for the lines of broad consent to be crossed for the purposes of neo-eugenic transhumanism R&D, especially under the helm of Collins who has carried the eugenic torch of the HGP’s directorship, passing it down from Watson to Guttmacher.
For a more thorough perspective on the implications of broad consent research with respect to the PMI Working Group’s crypto-eugenics connections, review my previous two articles on the PMI: “The Precision Eugenics Initiative?” and “The Precision Eugenics Initiative (Part 2): The Precision Transhumanism Initiative.”
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John Klyczek has an MA in English and is a college English instructor, concentrating on the history of global eugenics and Aldous Huxley’s dystopic novel, Brave New World. He is also a contributor to the Intrepid Report and the Dissident Voice.