Eugenics and the genetic testing of embryos and fetuses

In a recent article in the Australian media Julian Savulescu, a noted Oxford ethicist who is a visiting professor at Monash University in Melbourne, makes the contention that selecting which babies are born by doing genetic testing on embryos or fetuses and only allowing those that are desired to live to birth in the way that it is allowed in Australia shares the moral problems of past eugenics programs that we have rejected. His point is that the current practice in Australia allows selection of embryos by preimplantation genetic diagnosis and fetal testing with selective abortion only for diseases and not for sex selection or other non-disease characteristics. By allowing selection based only on diseases the society is saying that “lives with disability are less deserving of respect, or have lower moral status.” That is why we rejected the eugenics programs of the past.

Savulescu points out that “If either the embryo or the fetus has a moral status – then it would be wrong to kill either, whether or not a disability is present. If the embryo or fetus does not have a moral status, it should be permissible to destroy an embryo or abort a fetus for any reason. In this way, paradoxically, allowing testing for diseases, but not for other genes, is eugenic in objectionable ways.”

It would be easy to go from there to saying that genetic testing of embryos and fetuses for the purpose of selecting who will be allowed to be born should not be done based on the principle of the value of all human lives underlies our rejection of eugenics, but he does not go that direction. Instead he moves toward the permissibility of all embryonic and fetal testing by saying that lifting the restrictions on personal liberty imposed by limiting genetic testing of embryos and fetuses to testing for disease would resolve the moral objection that the current policy involves morally impermissible eugenics. He gets there by saying that since most people already accept the testing of embryos and fetuses for diseases, we should not say that all such selective testing is wrong based on the moral status of embryos and fetuses and the way to validate people’s acceptance of testing for diseases is to allow testing for non-disease characteristics.

Savulescu’s means of getting to his conclusion is an interesting and commonly used one to justify things that have previously been understood to be wrong. Rather than giving arguments for why we should believe that a human embryo or fetus does or does not have full moral status, he says we have already accepted a limited practice that would otherwise have been considered immoral, so we should accept a broader version of the same sort of practice. This is the process by which immoral behavior takes over a society, and also the process by which an individual falls into immorality. First justify a very limited violation of morality, and then once that is accepted use that to justify further immorality.
That is why we need to stand firm on basic moral values such as the dignity and value of every human life. Defending the moral status of the weakest and most defenseless human beings is essential to avoid the acceptance of things like aborting fetuses because they are female that currently seem obviously wrong, but may become accepted by a gradual breakdown of moral values.

What the German Medical Association declaration has to teach us about codes of medical ethics

 

“The human rights violations perpetrated in the name of medicine under the Nazi regime continue to have repercussions to this day and raise questions concerning the way in which physicians perceive themselves, their professional behavior, and medical ethics.”  – The Nuremberg Declaration of the German Medical Association 2012

 

65 years ago this month the Doctors Trial concluded in Nuremberg, Germany. Sixteen Nazi physicians were found guilty of organizing and participating in crimes against humanity, including ghastly experiments performed on concentration camp prisoners without their consent. Earlier this summer, the German Medical Association (GMA) admitted that not just the doctors on trial but the whole German medical establishment, its leadership, and its most renowned researchers were responsible for the atrocities committed. “In contrast to still widely accepted views, the initiative for the most serious human rights violations did not originate from the political authorities at the time, but rather from physicians themselves,” according to the GMA statement.

Most sobering is that the German doctors thought that they were practicing ethical, Hippocratic medicine.  Their perception of themselves — doctors of the Nazi state rather than individual patients — coupled with their perception that  certain people contributed to the poor health of the state — Jews, Roma, the disabled — led them to do terrible things in the name of Hippocratic medicine.

The apparent breakdown in the millenia-old Hippocratic ethos led to the elaboration of the Declaration of Geneva to reinforce the humanitarian goals of medicine, and the Nuremberg code to protect human subjects of research. But if the example of the Nazi physicians teaches us anything, it is that neither Hippocrates, Nuremberg, Geneva, nor any other code of medical ethics can protect us if we do not acknowledge the basic human dignity inherent in all human beings. As witness, the original Declaration of Geneva reads, “I will maintain the utmost respect for human life, from the time of its conception . . .” The current version has been shortened to, “I will maintain the utmost respect for human life.” It is not difficult to see which class of humans has been quietly removed from the protections of the Declaration.

Is the AMA in danger of committing the same crimes as those for which the GMA has recently admitted responsibility? Are there some humans whose human dignity we have decided not to acknowledge? No, we don’t practice eugenic sterilization; but we do practice prenatal genetic screening and perform eugenic abortion. No, we don’t declare a “Life not worth living,” but we implicitly (and explicitly) use the calculus of “Quality of Life” as we make ethical decisions. No, we don’t do horrific experiments on prisoners; but we do experiment on the youngest and weakest of our species, our own embryos. And we do it all in the name of practicing good, ethical, humanitarian, Hippocratic medicine.

Some have declared in recent years that the concept of “human dignity” is useless in medical ethics. The GMA declaration shows us that, to the contrary, codes of medical ethics are useless without a robust concept of human dignity.

The myth of non-directive genetic counseling

An article and its accompanying editorial in this month’s American Journal of Obstetrics & Gynecology report on a study comparing the practices and attitudes of two types of specialists regarding prenatally diagnosed fetal abnormalities: maternal-fetal medicine (MFM) specialists, who are obstetricians; and fetal care pediatric (FCP) specialists, who are (as the name suggests) pediatricians. The article is titled, “Prenatally diagnosed fetal conditions in the age of fetal care: does who counsels matter?”

The answer to the question posed in the title is decidedly yes. For instance, compared to the pediatricians, the MFM obstetricians reported  more than twice the pregnancy termination rate among patients carrying a fetus with Downs Syndrome. They were more likely than the pediatricians to “somewhat or strongly support” a decision to abort a fetus with Downs Syndrome. The discussion section of the article notes that pediatric and obstetrician specialists may “hold contrasting perceptions of life with disabilities . . . We cannot explain why, after multivariate analysis, our reported termination rates differed between specialties for Downs Syndrome.”

Two observations: First, those who deny that prenatal genetic testing is eugenic claim that the counseling given around such testing is non-directive, that is, that it does not influence a woman whose fetus tests positive for some condition to have an abortion. They say that the counseling gives just the facts: “Your fetus has Downs Syndrome,” not,”You should abort this fetus because it has Downs Syndrome.” If the results of this study are true, it exposes that claim for the wishful thinking — or insidious deception —  that it is. As the study authors write, ” …our study supports concerns that prenatal decisions and outcomes may sometimes reflect provider attitudes.”

Second, isn’t it interesting that between obstetricians (who typically do not care for Downs Syndrome patients) and pediatricians, it is the specialists who actually care for patients who have Downs Syndrome, who actually know something about how the syndrome affects people and families, and who are far more familiar with the details of living with the syndrome, who are the ones less likely to recommend that a woman abort a fetus who is suspected of having it?

The aftermath of a state eugenics program

 

Elaine Riddick was 14 when she became pregnant by rape in North Carolina in 1968. A committee of five men called the Eugenics Board decided that, “Because of Elaine’s inability to control herself, and her promiscuity — there are community reports of her ‘running around’ and out late at night unchaperoned — the physician has advised sterilization. … This will at least prevent additional children from being born to this child who cannot care for herself, and can never function in any way as a parent.” A few hours after her son was born, a physician sterilized Ms. Riddick without her knowledge. (I am astonished to discover that there was still a Eugenics Board in my lifetime; I had thought that was all pre-WWII)

Now, more than 40 years later, another five-person board, the Governor’s Eugenic Compensation Task Force, has proposed giving $50,000 to each living victim of its eugenics program. Of the 7,600 people sterilized under the program between 1929 and 1974, some 2,000 are still alive. Ms. Riddick is incensed at the notion: “Fifty thousand dollars? Is that what they think my life is worth? How much are the kids I never had worth? How much?”

North Carolina was only one of more than 30 states that carried out eugenics programs that forcibly sterilized up to 65,000 people, but it had one of the more robust programs.  “The board’s declared goal was to purify the state’s population by weeding out the mentally ill, diseased, feebleminded and others deemed undesirable. . . In a 1950 pamphlet, the Human Betterment League of North Carolina said the board was protecting ‘the children of future generations and the community at large,’ adding that ‘you wouldn’t expect a moron to run a train or a feebleminded woman to teach school.'” The state carried out its program using deception if necessary, telling subjects that they were going in for appendectomies or that the operations were reversible.

Who knows which accepted, scientific practices of today will be the stuff of attempts at corrective action of tomorrow? Embryonic stem cell research? Commercial surrogacy? Paying young women to “donate” eggs? Human organ trafficking? Whatever it will be, as the story of Elaine Riddick demonstrates, money can never compensate someone for having their basic human dignity ignored and trampled upon.

(All quotes from the LA Times article link)

From Eugenics to Genocide (A Short Walk)

Last week I wrote about the practice of eugenics in modern American obstetrics:  induced abortion performed because prenatal testing shows a potential chromosomal abnormality or birth defect.  This past week, the BBC News Online ran a series of stories under the headline “India’s unwanted girls.”  These stories tell of the practice in India of induced abortion performed because prenatal testing shows a particular unwanted chromosomal “abnormality”:  the presence of the XX chromosome pair, i.e., aborting a baby simply because she is female.  Because of long-standing prejudices and practices, in many parts of Indian society a female child is considered undesirable.  There is widespread availability of prenatal ultrasound clinics for sex determination, and so many parents  avail themselves of  these clinics’ services to guide abortion decisions that in some areas of India there are less than 840 female children for every 1000 male children.  Some Indian activists use the word “genocide” to describe this selective killing of girls.  Lest anyone suspect that Indian families thought up this novel use of medical technology on their own, the following quote from the story provides chilling evidence to the contrary:  “In 1974, Delhi’s prestigious All India Institute of Medical Sciences came out with a study which said sex-determination tests were a boon for Indian women.  It said they no longer needed to produce endless children to have the right number of sons, and it encouraged the determination and elimination of female foetuses as an effective tool of population control.”

Three observations:  First, given the rationalizations for the unfettered right to abortion that pro-choice advocates have promulgated in this country, they would be have to be mute in the face of sex-selective abortion.  They cannot say that it is wrong to abort girls, because if it is wrong to abort girls, then it is wrong to abort boys.  If they admit that it is wrong to distinguish — and extinguish — foetuses on the basis of an arbitrary criterion such as gender, then they would have to admit that it is wrong to do so on the basis of any arbitrary criterion — such as the presence of a disability.

Second, the term “genocide” used by certain Indian activists seems extreme, but it may not be such a long walk from eugenics to genocide.  The justification used to commit foeticide on the basis of gender can be employed to commit foeticide, say, on the basis of  a genetic predisposition to obesity (A 1993 March of Dimes poll found that 11% of parents said they would abort a  fetus whose genome was predisposed to obesity), and is not far from the justification used to commit murder on the basis of whether one belongs to the Hutu or Tutsi tribe.

Third, this tragic story shows yet again what happens when medicine abandons its Hippocratic ethos of commitment to the patient and instead uses its considerable power to pursue goals such as “population control,” social stability — or eugenics.