eugenics

State-sponsored Liberal Eugenics Has Just Begun

C. Ben Mitchell, Ph.D., and C. Christopher Hook, M.D.
Fellows
Institute of Biotechnology & the Human Future

The age of state-sponsored liberal eugenics has just officially begun. On April 29, 2006, Medical News Today announced that Case Law School was receiving $773,000 from the National Institutes of Health (NIH) to "develop guidelines for the use of human subjects in what could be the next frontier in medical technology - genetic enhancement."

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 an ominous shift in tax-funded genetic science.

The National Human Genome Research Institute, under whose aegis the grant was awarded, has overseen, along with the Department of Energy, the project to map the entire human genetic blueprint. The putative 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.

In the process, guidelines had to be expanded to protect human subjects who might be involved in genetic experimentation. There are elaborate federally-mandated protocols in place, including the requirement for Institutional Review Board (IRB) oversight of any research involving human subjects. A fairly rigorous process for obtaining informed consent has also developed over time. But the most compelling guidelines come out of the context of previous abuses of research. For instance, articles 4-6 of the Nuremberg Code state that:

4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.

5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.

6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.

Experiments for enhancement purposes can never appeal to "necessary" harm, nor can enhancement ever possess "humanitarian importance" sufficient to warrant the risks. 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 other words, being a normal human in no longer good enough.

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 historical 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: there has been 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 its 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, and well-founded, public worry about the use of genetic technology for enhancing human beings. Yet now we have a government agency funding research built on the assumption that it is ethical to re-engineer human beings genetically, we just need the proper guidelines in place.

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 opines that not having guidelines will result in ". . . driving this type of research into the realm of 'underground' illicit or off-label use and serf-experimentation [sic?], 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, even if it is true, it is not a moral or logical argument. 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 we need to regulate the practice. We have a "ban" in place. 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 it first. We need to draw a line in the sand and say, "Not beyond therapy."

State-sponsored human enhancement experimentation is a form of liberal eugenics. Eugenics is an ideology used to fuel efforts to improve human genetic stock. Negative eugenics is the effort to exclude those who have "bad genes" -- those with genetically-linked conditions like mental retardation and physical disability. Positive eugenics is the effort to improve the human genetic condition. The old form of positive eugenics employed selective breeding techniques -- mandating or rewarding people with "good genes" to reproduce with others with "good genes."

In United States at the turn of the 20th century, eugenics took the form of state-mandated sterilization for people with mental retardation, or somehow deemed to be a dreg on society. Contests were convened at county and state fairs and awards were granted to families with desirable genetic traits, rewarding them with medallions marking them as a "Fitter (or Fittest) Family." Margaret Sanger started Planned Parenthood during this time to help rid society of the genetically unfit (including, in her mind, African-Americans). In Nazi Germany, of course, eugenics took the form of the Holocaust. The eugenic ideal behind this NIH project is more properly called "positive liberal eugenics." It is "positive" because it focuses on enhancement. It is "liberal" because, presumably, only those who consent to the experiments will be subject to the genetic modification. And it is "eugenic" because the goal is to improve the human genetic stock.

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 that will make some people "better than well," to use Carl Elliott's elegant neologism. 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. Injustice already abounds in our society. How do we hope even to begin a discussion about equal access to genetic modification for enhancement purposes?

Mark it down. 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 (though, hypocritically, the very nature of their project assumes that we can know the difference between enhancement and therapy). They will argue that in "rare" cases, re-engineering can be justified in a liberal society that respects "freedom" and "autonomy." The cases they define will then be used extensively by the wealthy and their attorneys to justify, and obtain, whatever narcissistic alteration they want, probably figuring out some way to get our insurance and federal money to pay for it. The coercive power of the marketplace and peer pressure will then fuel an "enhancement" race. And, one day, we will all wake up in the movie "GATTACA," victims of a coercive tyranny, not necessarily government imposed or enforced, but a nightmare nevertheless. This is the world of laissez-faire eugenics, the world Mehlman et al., and apparently the NIH, wants to create. Worse, future generations will inherit the whirlwind we created, the victims of our ambitions and inability to say "no." This grant does not merely cross a moral line in the sand, it uses your tax dollars and ours to explode the wise brick wall ten-feet wide that has historically and clearly proclaimed, "healing, not enhancement," turning it to rubble.. So much for "liberal" government.

C. Ben Mitchell, Ph.D., and C. Christopher Hook, M.D., are Fellows of the Institute on Biotechnology and the Human Future. The views of the authors are their own and do not necessarily reflect the views of the institutions with which they are affiliated.

ⁱhttp://www.medicalnewstoday.com/medicalnews.php?newsid=42331
ⁱⁱhttp://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=7023235&p;
_grant_num=1R01HG003879-01&p;_query=(genetic+enhancement)
&ticket;=21929877&p;_audit_session_id=103616749&p;_audit_score=27&p;
_audit_numfound=1&p;_keywords=genetic+enhancement
ⁱⁱⁱAvailable online at http://www.bioethics.gov/reports/beyondtherapy/index.html and http://www.dnapolicy.org/pub.reports.php?action=detail&report;_id=3
^ivSee Edwin Black, War Against the Weak: Eugenics and America's Campaign to Create the Master Race (2003).