ANALYSIS: NIH eugenics project a flashback to Nazi research
Professor of law and bioethics Max Mehlman will lead a team of law professors, physicians, and bioethicists in a two-year project aimed at exploring guidelines for altering the human species through genetic enhancement. This development signals a gargantuan shift in tax-funded genetic science.
The National Human Genome Research Institute, under whose authority the grant was awarded, has overseen, along with the Department of Energy, the project to map the entire human genetic blueprint. The goal has always been understood to be that by understanding our genes and their relationship to disease conditions, we might be able to offer therapies and cures for the thousands of genetically linked illness that plague humankind. In other words, the goal was therapeutic. And billions of U.S. tax dollars have been spent on this enterprise.
Thus, the assumption has always been, both implicitly and explicitly, that human genetic research would have the goal of treating a patient for a genetic-related illness.
The NIH’s grant makes this point very clear when it says, “Researchers and bioethicists have developed guidelines to protect human subjects in clinical experiments involving genetic technologies. However, these rules were developed for investigations on therapeutic modalities.... To date, virtually no attention has been paid to whether these rules would be appropriate for clinical investigations to establish the safety and efficacy of genetic technologies intended for enhancement . . .”
Previous guidelines have neglected human genetic re-engineering for good reason: Until now there was a tacit assumption that genetic enhancement could not be endorsed ethically. A discussion of the ethics of genetic enhancement has been taken up recently by the President’s Council on Bioethics in their report, "Beyond Therapy: Biotechnology and the Pursuit of Happiness," and public opinions have been surveyed by the Center for Genetics & Public Policy at Johns Hopkins. Both reports show significant public worry about the use of genetic technology for enhancing human beings.
Yet now we have a government agency funding research on the assumption that it is ethical to re-engineer human beings genetically. Again, the language of the NIH grant is revealing: “the absence of guidelines is likely to make research institutions reluctant to undertake this kind of research, denying clinicians and the public data on safety and efficacy from adequate and well-controlled clinical studies.... ” No, the absence of guidelines should tell research institutions that they should not engage in this research because it is patently unethical to attempt to “enhance” human beings genetically.
Moreover, the grant states that not having guidelines will result in “driving this type of research into the realm of ‘underground’ illicit or off-label use and [self]-experimentation, which could cause serious harm to subjects.”
This is a not-so-subtle version of the inevitability argument: It is inevitable that someone’s going to do it, so we might as well do it ourselves. But just because something will be done, does not make it right to do it. Just because someone will drive through downtown Chicago shooting innocent people at random, does not mean that we throw up our hands and say: “OK, let’s just put guidelines in place to regulate the practice.” No, we put a legal “ban” in place. So, just because some unscrupulous scientist may perform human enhancement experiments does not mean we need a regulatory regime in place so the government can do so. We need to draw a line in the sand and say, “Not beyond therapy!”
Make no mistake about it; so-called enhancement is merely a desire to re-engineer the human person either for the sake of competitiveness or out of a vile self-loathing of one’s finitude and limitations.
In the United States at the turn of the 20th century, eugenics took the form of state-mandated sterilization for people with mental retardation. Awards were also granted to families with desirable genetic traits, rewarding them with medallions marking them as a “Fitter Family.” In Nazi Germany, of course, eugenics took the form of the Holocaust. When men play God, they play God badly.
Have we learned none of the lessons of the older eugenic age? Since those less-than-halcyon days we have been spending huge amounts of legal and social capital trying to convince American culture that all human beings have equal rights and ought to be valued as much as another, regardless of their ethnicity, abilities, disabilities, gender or age. We have been teaching our children that, regardless of genetic traits, we are to respect one another, bear one another’s burdens, and celebrate our inherited differences.
Now we seem to be standing on the precipice prepared to throw all of those hard-earned lessons into the abyss of a technocratic utopianism that is ready to create new inequalities.
How many will have to die in human re-design experiments to show us this is a really bad idea? Moreover, through genetic enhancement we will inevitably create at least two genetic classes of people: the gene-enhanced and the rest of us. We have not even figured out how to solve access to healthcare for therapeutic and preventive goals. How do we hope even to begin a discussion about equal access to genetic modification for enhancement purposes?
Here’s how the strategy will work: Mehlman and colleagues will begin a search for the most emotionally compelling marginal cases to show that a fine line between therapy and enhancement cannot be maintained. They will argue that in “rare” cases, re-engineering can be justified in a liberal society that respects “freedom” and “autonomy.” And one day we will all wake up in the movie "Gattaca." Worse, future generations will inherit the whirlwind we created.
This grant does not merely cross a moral line in the sand, it uses your tax dollars and mine to demolish a brick wall 10-feet wide, turning it to rubble. We must protest the use of our tax dollars for genetic enhancement research of any kind.
C. Ben Mitchell, Ph.D., is consultant on biomedical and life issues for the Southern Baptist Ethics & Religious Liberty Commission and is associate professor of bioethics & contemporary culture at the Chicago-area Trinity Evangelical Divinity School in suburban Chicago.