The Chronicle: Colloquy Live Transcript

Ethical Eugenics?

Wednesday, April 30, at 1 p.m., U.S. Eastern time

Can eugenics ever be moral? What lessons does a program in Cyprus offer for biomedical ethics?

Eugenics is associated with cruelty and racism, but on the island of Cyprus, a eugenics program is entering its third decade without any significant opposition. The program is designed to eliminate thalassemia, a horrific inherited blood disease that is prevalent in Cyprus (in both the Greek and Turkish parts of the island). Before marrying, Cypriots must be tested so that carriers of the disease gene can be identified. They are then offered genetic counseling if they marry, and abortions if a fetus is determined to have the disease. Even though the only requirement is the premarital test, the program has resulted in the near-elimination of new cases of the disease.

» Choosing Eugenics (5/2/2003)

Ruth Schwartz Cowan is a professor of the history and sociology of science at the University of Pennsylvania who is writing a book that will discuss the eugenics program in Cyprus. Ms. Cowan is a leading scholar on the intersection of gender studies with the history of science and medicine. She began her study of Cyprus's program deeply skeptical of it, but has since come to respect it. Ms. Cowan will respond to questions and comments about the issues raised by Cyprus's program on Wednesday, April 30, at 1 p.m., U.S. Eastern time. Advance questions are encouraged and may be posted now.

A transcript of the chat follows.

Lila Guterman (Moderator):
Welcome to Colloquy Live, The Chronicle's weekly online discussion forum. I'm Lila Guterman, a science writer here, and I'll moderate today's chat.

I'm pleased to welcome Ruth Schwartz Cowan, a historian of science who visited Cyprus to learn about the eugenics program and find out why everyone there seems to view it as ethical.

Ruth Schwartz Cowan:
I visited Cyprus in the spring of 1999; it has taken me several years to fully digest the meaning of what I learned there. I am grateful to Lila Guterman, and to the Chronicle editors, for expressing my views on these difficult subjects accurately and succinctly. The full argument will appear in a book that Harvard University Press will publish (as soon as I manage to finish the manuscript!) tentatively called, Bad Genes, Good People: The History and Politics of Genetic Screening.

Question from Rafal Smigrodzki, University of Virginia:
Do you think that the use of the term "eugenics" does a disservice to, in my opinion, the Cypriots' perfectly reasonable and ethical facilitation of voluntary efforts to give children the best genes we can? Should we come up with a term devoid of the historical baggage?

Ruth Schwartz Cowan:
Absolutely right; a better term could just be "genetic screening." However, using the term eugenics has, right now, a rhetorical value. It forced me (and, I hope, others) to confront the worst case scenario and to try to understand, explicitly, what makes the Cyprus program different from that scenario. Whatever that difference is, that is what we need to protect in genetic screening in order to keep it from slipping down the slope into eugenics.

Question from C. Deltas, Prof. of Genetics, U. of Cyprus:
Dear Prof Cowan, last October I had published in the daily press of Cyprus an article where I brought up the issue of genetic testing and I was asking this simple question. Have we taken adequate advantage of all the progress we have made in the understanding of human genetics? In other words, besides thalassaemia and few other very frequent conditions, have we done enough about informing people of the prospect of having a healthy child through prenatal diagnosis and proper genetic counselling? After all, the parents who suffer (like the thalassaemic's parents) do not care how frequent the disease they are carriers of is. Therefore, if the application of preventive programs for thalassaemia is legitimate, similar programs for other severe diseases should also be implemented, WITH CAUTION. And there are many diseases amenable to prenatal diangosis or early presymptomatic diagnosis. I don't think we should wait until gene therapy is available before we do something. Please comment. Thank you very much.

Ruth Schwartz Cowan:
What I found striking (and significant) about the Cyprus program was that so many different sectors of Cypriot society (physicians, parents, public health officials, patients, off-island financial donors) supported and continue to support the prevention program. If a similar, ethically based, consensus can be developed on Cyprus or in other places behind screening programs for other diseases--and if that consensus develops democratically--then I agree with you that such programs should be put in place.

Question from John Lunstroth:
Do you think it makes a difference in evaluating a eugenics program if the disease being screened for does not manifest itself until later in life? It is easy to imagine a baby being born and immediately having a physical stigma, but a fetus that can be born and live normally for 40-70 years - should it be aborted? Is this a continuum (of age of onset)? In Cyprus there is widespread social support for this obvious disorder. Would there be the same widespread social acceptance for a disease that came late? How does probability play into it? If the disease was late onset, and there was a 80% chance of getting it? or a 50% chance? It seems that at some point the attenuation between the test and the disease becomes too great to justify screening for it, and makes it more unlikely their will be community support for it. What do you think?

Ruth Schwartz Cowan:
There are two ways to answer this set of questions: (a)in terms of a mandated screening program--which is what Cyprus has for thalassemia, and (b) in terms of voluntary screening programs, which exist all over the world (including in Cyprus, for conditions other than thalassemia).

No, I don't think I would advocate mandated screening for a late onset genetic condition--and I don't think advocates of such a program could get the kind of consensus that exists for the program on Cyprus. I would feel this way whether the disease was mono-factorial (in which case there could be close to 100% certainty of getting it) or multi-factorial (which would lower the certainty). The reason is precisely what you allude to, namely that with a late onset disease, neither the parents of nor the individuals with the disease would face lifetimes of suffering.

But, if individuals know that the disease runs in their families and they want to be screened (or have prenatal diagnosis) and then make their own decisions about how to proceed, they ought, in my view, to be allowed to do precisely that. They are in the best position to know what kind of havoc such a disease can wreak upon a family--and to weigh that suffering against the suffering consequent on the abortion.

Question from Charlotte Borst, Union College, Schenectady, NY:
I'm not sure I understand the "moral dilemma" posed by this case. As Professor Cowan knows, the US instituted a premarital test (also mandatory) for syphillis early in the twentieth century. To my knowledge, American policy makers have not questioned the rationale for this, nor has anyone branded it as "eugenics," though in fact, it is a eugenic measure. Unlike Cyprus, those who test positive for syphillis in the US prior to marriage are not automatically offered treatment. Instead, there is a moral opprobrium that, in the past at least, drove some people to not seek treatment. At least the Cyprus case is related to an inherited disease that does not seem to have a moral connotation. Health services are offered to people who test positive, and people seem to have adopted the attitude that they are being helped, not hurt, and they are not being coerced. Thus, I don't see any ethical issues.

Ruth Schwartz Cowan:
First, the syphillis test and the thalassemia tests are quite different. The Wasserman test for syphillis identified (if I recall correctly)whether or not an individual had antibodies to the bacterium that causes syphillis. The thalassemia tests are of two kinds; the first identifies carriers of the gene (the parents); the second identifies whether any particular fetus is a homozygote.

States mandated the pre-marital Wasserman test (which, incidentally, most of them no longer do, since civil libertarians regarded the tests as eugenic and sued, successfully, to have the laws changed). States intended that asympotmatic carriers of syphillis would have a course of antibiotics before having children, so that the children would not be at risk of being born disabled. States did not intend that women would be counseled to abort if they became pregnant before they (or their sexual partners) were cleared of the bacterium. It is the state intention that prenatal screening for thalassemia lead to voluntary decisions to abort that makes the Cyprus program different, and ethically worrisome to many people.

Question from charles, NIH:
Clearly, the use of the word "eugenics" in this context refers to a voluntary, or at least not state-enforced/endorsed practice. Why the attempt to make this sound like an ethical debate?

Ruth Schwartz Cowan:
My answer to Charlotte Borst, who asked about comparing thalassemia testing to syphillis testing, contains my answer to this question, but I'll answer again, here, in order to be explicit. There are two fundamentally ethical objections to the Cyprus program: (a) that it is mandated by a social authority--in the North by the state, in the south by the Cypriot Orthodox Church; and (b) that it involves state "approved" selective abortion.

Question from Evangelos Eleftheriou, Research Professor, University of Alabama at Birmingham:
1) Is there adequate information on the number of abortions performed as part of the Cyprus Eugenics program? 2) Can the information be used in order to assess the number of abortions relative to deaths due to thalassemia prior to commissioning the program?

Ruth Schwartz Cowan:
I'll try to answer as concretely as I can. I doubt that anyone knows precisely how many abortions have been performed as a result of the screening program. There are many reasons for this, not the least of which is that many people make the decision to abort in private clinics--which means that there is no central record. Even if such figures existed, they could not be weighed against the deaths from thalassemia before the program existed, since children have been dying from thalassemia since time immemorial. All children born with the disease died from it very early in their lives before there was adequate therapy; on Cyprus that meant before about 1950.

On the other hand, the physicians in charge of both thalassemia therapy and screening are certain of this: the screening program, coupled with prenatal diagnosis, lowered the number of abortions being performed per carrier-couple. Between the beginning of the voluntary screening and education program (about 1960) and the advent of prenatal diagnosis (about 1976), most couples who knew they were both carriers were terminating all their pregnancies. After prenatal diagnosis these couples were only terminating (this is an average, over the whole population of carrier-couples) 1/4 of their pregnancies, since the disease is a single gene recessive.

Question from Ellie Rosenfeld, Doctoral Candidate, University of Adelaide Departments of Public Health and Philosophy:
In the case if Tay-Sachs disease in Ashkenazi Jews, screening prior to conception in the Dor Yeshorim program to establish carrier status avoids abortion, a sensitive issue for ultra-orthodox Jews. Without making any judgement on the plurality of moral perspectives about abortion, two questions:

(a) Is the prevalence of beta-thalassaemia on Cyprus such that an analagous strategy re screening for carrier status is precluded?

and

(b)How does the beta-thalassaemia Cypriot community deal psycho-socially with those people for whom abortion is anathema for secular moral or religious reasons?

Ruth Schwartz Cowan:
(a) The Dor Yeshorim program works because in the ultra-orthodox communities that it serves, marriages are arranged by matchmakers. Young people are tested in early adolescence and matchmakers are, therefore, able to insure that two carriers do not marry--and the privacy of the young people can be more or less completely insured. This strategy would not have worked on Cyprus, where arranged marriages were not tolerated by recent generations of young people.

(b) I can't answer this question because I did not have time to explore it in my interviews. However, I can tell you that, in both parts of Cyprus, the state pays for therapy for everyone with thalassemia, whether born before the screening programs were instituted, or after. In Grek Cyprus , this also means that the state pays for the work of a psychologist who tries to help thalassemics learn to cope with the stresses of their lives.

Question from Joseph Bloch, NJ Transhumanist Association:
Do you believe the success of the Cyprus eugenics program could pave the way towards a "softening" of public attitudes towards eugenics in general, possibly to the point where programs designed to enhance human capabilities, rather than merely eliminate disease?

Ruth Schwartz Cowan:
No, I don't. There are two reasons. First, we've had forty years of widespread experience with genetic screening and prenatal diagnosis and selective abortion--and I've not discerned any softening of public attitudes towards genetic programs to enhance human capacities in that time (there are, of course, lots of non-genetic programs for enhancement that people vote for with their feet).

Second, and this is something never mentioned by either proponents or opponents of genetic enhancement: Until such time as it becomes possible to isolate the genes that provide enhancement and to insert them into a genome, the only way to get a "perfect baby" will be through repeated selective abortions. I haven't met heard of anyone willing to undergo that.

Right now the whole argument seems like a red herring to me.

Question from Nina Stoyan-Rosenzweig, University of Florida:
Who initiated the program, and in what way did the public become involved? How much popular support was there and was there any sort of a grass roots initiative? How does the public feel about the disease? Do they see it as a public health problem or has the impetus come from the educated or elite?

Ruth Schwartz Cowan:
There are two separate programs, one in Turkish Cyprus and one in Greek Cyprus. In Turkish Cyprus the program was initiated by parents of thalassemic children and by public health officials and physicians, all of whom were inspired by a visit from a WHO consultant. It was created by a legislative body and is paid for out of public funds.

In Greek Cyprus, the program was initiated by parents of thalassemic children, and by physicians who cared for these children, all of whom were inspired by a visit from two WHO consultants. Initially it was paid for by private donations; subsequently the costs were covered by public funds. It was mandated by the Council of the Cypriot Orthodox Chruch.

I don't know how, in the context of Cypriot society, to distinguish these social actors as being either solely "grass roots" or solely "elites." Today both programs have considerable public support; in Greek Cyprus a day is set aside, every spring, for public fund-raising activities--and lots of money is raised.

Question from Frank Forman, economist and author of The Metaphysics of Liberty:
Why is coercive negative eugenics, preventing parents from giving birth to children who are likely to be burdens on the taxpayers, so much more horrible than taxation, the military draft, the quarantine, and various maternalistic health and safety regulations. And why is positive eugenics, subsidies for children that are likely to have high intelligence, say, so much more horrible than subsidies for education?

Ruth Schwartz Cowan:
Coercive negative eugenics is regarded as horrible by many people, including me, because it reduces--markedly--the autonomy of people who have committed no crime against society.

Positive eugenics, in the form of subsidies for children who are likely to have high intelligence, is horrible because it could worsen class and race distinctions that democratic societies try, under the best of circumstances, to alleviate. It would also be a waste of money, in my view, since there is no good way to predict either the future intelligence or the future social worth of infants.

Question from Brian Vastag, JAMA:
Hello - It seems that in the US, the potential for genetic screening to engender irrational reactions from prospective parents would be much greater than in Cyprus, where a small population has been well-educated about a specific risk. For instance, women regularly choose to have amniocentesis even though in many cases the risk of that procedure is quite high compared to the risk of actually bearing a child with Down's syndrome. Does this seem like an accurate assessment?

Ruth Schwartz Cowan:
What is "rational" to one person, may well not be "rational" to another. Just to use the example you give: a young woman may choose to have amniocentesis (even when the numerical risk of miscarrying is higher than the numerical risk of having a Down's baby) because she believes that she can become pregnant again easily but she will have to spend the rest of her life struggling with the problems created by being the parent of a disabled child. Are you sure you want to call that calculation "irrational"?

After studying genetic screening programs in many countries, not just Cyprus, I've come to the conclusion that those programs are best which allow parents to make decisions about who they will raise and which allow women to make decisions about when it is right to terminate their pregnancies. Some women and couples will end up making decisions I would not have made, but that is better than having no choices at all, or having choices mandated by governments.

Question from Stephanie M. Fullerton, Anthropology, Penn State University:
There is a large body of evidence, both direct and indirect, which suggests that the genetic mutations that lead to hemoglobinopathies like sickle cell anemia and beta thalassemia have proliferated in human populations because they protect carriers (those unaffected who inherit a single copy of the gene) from malarial infection.

I assume that malaria is no longer a major health concern in Cyprus. Is this true? And if it isn't, has there been public discussion about the population consequences of reducing the frequency of these "protective" variants in the population as a whole?

Ruth Schwartz Cowan:
Yes, it is now clear that the thalassemia mutation will protect carriers from malaria, just as the sickle cell mutation does. And, yes, it is also true that malaria is no longer a problem on Cyprus (in fact, it was one of the first locales to be declared free of malaria).

I am not, obviously, a geneticist. However, I have been told that it is not true that the prevention program will significantly reduce the incidence of the mutation. Carriers continue to have children (most of them are not in heterozygote marriages, after all) and thalassemics themselves are now having children (since Desferal and transfusion therapy allow them to live past early adolescence.)

Question from Norman Vickers, retired physician, gastroenterology:
Why can't we eliminate the "eugenics" and just call it disease screening? That way, it makes all kinds of sense. Sickle Cell anemia is probably the most commonly transmitted genetic disease in the US. Most people who carry the trait ( asymptomatic usually) are unlikely to be tested. It's a preventable disease.

Ruth Schwartz Cowan:
I haven't studied the sickle cell screening programs in the US nearly as carefully as I have studied the program in Cyprus, but I have the impression that nowadays a much larger number of people likely to carry the sickle cell trait are asking to be tested.

Question from Eric Palmer:
Professor Cowan, In your view, what do you think the Cypriots have done wrong, organizationally and/or ethically, in their implementation of the program?

Ruth Schwartz Cowan:
Not much. I think the Cypriots have been both very aware of what they were doing and very careful about doing it right.

Lila Guterman (Moderator):
That's all the time we have for today's Colloquy Live. Thanks to everyone who sent in questions. Sorry we didn't get to all of them. And special thanks to Ruth Schwartz Cowan for joining us today.

Ruth Schwartz Cowan:
Many people have expressed the concern that Paul Lombardo has expressed in the Chronicle article, namely that there is certain amount of social coercion at play in the prevention programs on Cyprus. This is undoubtedly true. But I wonder if Mr. Lombardo, or anyone else, can tell me about a reproductive decision that is not a combination of individual free will and a certain amount of social coercion. One of the things that I've come to realize in my years of research on this subject is that,reproduction is, after all, both a personal and a social process.