EUGENICS - EUTHENICS – EUPHENICS

 

     

 

      

 

                    In Germany they came first for the Communists, and I didn't speak up because I wasn't a Communist.

                    Then they came for the Jews, and I didn't speak up because I wasn't a Jew. Then they came for the trade

                    unionists, and I didn't speak up because I wasn't a trade unionist. Then they came for the Catholics, and

                    I didn't speak up because I was a Protestant. Then they came for me, and by that time no one was left to

                    speak up.

 

                                                                                             -Martin Niemoeller (1892-1984)

 

     

 

     

 

     

 

                                                      Important Definitions

 

     Eugenics: meaning "well born" or "good birth" relates to measures to select/change/improve/discard a

     genotype/phenotype of an offspring in order to improve the line. It can be divided into negative and positive eugenics.

     Individuals can trigger negative and positive eugenic measures (personal Eugenics) or measures can be forced in

     different degrees onto the individual (social Eugenics).

 

     Negative Eugenics: preventing the births of children, with characteristics (genotypes/phenotypes) viewed as unhealthy

     or undesirable or preventing child bearing by "undesirable" individuals.

 

     Positive Eugenics: producing genetically enhanced children, giving them genetic characteristics (genotypes) they

     ordinarily would not be born with, and encouraging desirable individuals to bear more children.

 

     Euthenics: Measures to improve the environment in order to improve health, appearance, behavior, or well-being of

     society.

 

     Euphenics: Measures to improve the individual or phenotype (the body) by biological or medical means.

 

     

 

     

 

     

 

     

 

     The Human Genome Project is supposed to finish unraveling the mystery of the genetic endowment of the human race by the year 2003. Private

     companies claim that they will accomplish the task even earlier. Simultaneously, the so called genetic revolution is leading to a variety of new

     procedures that will allow us to make use of this new knowledge in a variety of ways. We will not be able to stop the increase of knowledge.

     Therefore, the only safeguard is to raise questions and express concerns about the use of the new technologies and new knowledge.

 

     A few key questions are:

 

               1) Who owns the genes/gene products?

 

               2) Who controls the actions made possible by the genetic revolution?

 

               3) Who has access to the new knowledge?

 

               4) What are the benefits/dangers of the genetic revolution?

 

     Thanks to the genetic revolution we will be able to manipulate and control more and more genotypes and phenotypes of human beings and their

     offspring’s. Therefore, I want to focus in this paper on the idea of eugenics, and will try to answer four questions:

 

        1.Where do we draw the line in eugenic practices?

 

          2) Can we draw a line in eugenic practices?

 

          3) Is there such a thing as free choice and autonomy in eugenic practices?

 

          4) What is the impact of eugenic practices on human rights?

 

          

 

     But before we go to answer the questions, I would like to offer some thoughts as to what eugenics is and is not.

 

     A) Eugenics is not associated with a cell, a zygote, an embryo, a fetus, a person, or a human being. Eugenics is associated with a characteristic of

     a cell, a zygote, an embryo, a fetus, a human being.

 

     B) The underlying issue in eugenics is that someone decides , based on stated or unstated values which characteristics are worthy enough to

     be part of society and which are not (Discrimination). This selection process is not based solely on genetic composition. For example,

     elimination of a fetus believed to be exposed to thalidomide is based on a phenotype.

 

     C) Discrimination is not associated with a cell, a zygote, an embryo, a fetus, a person, or a human being. Discrimination is associated with a

     characteristic of a cell, a zygote, an embryo, a fetus, a human being.

 

     D) There are many ways to select or deselect the genotype/phenotype of one’s offspring or of living members of society through prefertilisation

     diagnostics, preimplantation diagnostics, prenatal testing, post natal testing, in vitro fertilization, abortion, sperm banking, egg banking,

     cloning, infanticide, fertilization, adoption or mate selection (for more details of the justification of infanticide see Peter Singer's book

     "Rethinking Life and Death")(1).

 

     E) Eugenics occurs around the world because we discriminate against and eliminate unwanted characteristics (whether they are inherited or

     not), all the time. We continually make choices in favor of a characteristic or against a characteristic. The only difference is that the nature

     and extent of the characteristics we can choose to eliminate or selectively nurture is now increasing with advancements in genetic knowledge

     and procedures.

 

     F) Many procedures are not intrinsically eugenic but can be used for eugenic purposes. For example, abortion per se is not eugenic, but can be

     used in an eugenic fashion.

 

     Now let's move to the questions Question 1 and 2; Where do we draw the line? And can we draw a line?

 

     The key question is how a society (social eugenics) or a person (personal eugenics) decides which characteristics are permissible in an

     offspring/offspring to be. Can a society influence or regulate the decisions of social/personal eugenics? Is there a rational way to distinguish

     between e.g. Tay-Sachs, beta-Thalassemia, sickle cell anemia, thalidomide, Alzheimer, PKU, gender, sexual orientation (if a way were ever

     found to predict it), mental illness, cystic fibrosis, cerebral palsy, spina bifida, achondroplasia (dwarfism), hemophilia, Down Syndrome, coronary

     heart disease, osteoporosis, and obesity?

 

     Tay-Sachs

 

     The first step in distinguishing among these characteristics would be to see whether the genotype/phenotype ensures a certain death after

     birth. Tay-Sachs is such an example. Tay-Sachs is often used as an example to justify eugenic measures because most people will not want to

     condemn a human being to a slow, painful death. Eugenic measures can work on two different levels: (a) on the level of the potential offspring (in

     different stages of development) which would lead to selective reimplantation, selective abortion or infanticide, and (b) on the level of the gene

     carrier through testing of parents, prevention of marriage and prevention of conception. Which level will be used depends on the cultural,

     societal, moral, and religious background of the group. In Western countries the procedure is mostly on the level of the offspring; but there are

     groups where it works on the level of the carrier (e.g., the Dor Yeshorim program started in Brooklyn NY among Ashkenazi Jews)(2). But unlike

     Tay-Sachs, none of the other characteristics listed above result in certain death if treated.

 

     Beta-Thalassemia

 

     In some countries, notably Sardinia (part of Italy) and Cyprus, premarital blood tests for beta-thalassemia (a blood disorder leading to death in

     early adolescence unless treated intensively) are widely applied – in Cyprus they are mandatory. Thalassemia is treatable, but the procedure is

     very costly and has threatened to bankrupt the entire health care system in both areas. Although "unfavorable" test results showing that both

     partners are carriers does not prevent them from marrying each other, people will nearly all follow an eugenic follow-up procedure: 25% on the

     level of the carrier and 75% on the level of the offspring (3).

 

     Beta-Thalassemia, although treatable, still leads to eugenic decisions (social and personal eugenics) because of the reality in many countries

     that the health care system can't afford to provide treatment. The availability of affordable treatment can play a role in the eugenic decision

     regarding many genotypes/phenotypes (e.g. cystic fibrosis, hemophilia, insulin-dependent diabetes and many others). All of these conditions are

     deadly if treatment is not provided.

 

     Down Syndrome

 

     Down Syndrome is one of the all time favorite targets for eugenic elimination (between 80-95% of people who learn that their baby might have

     Down Syndrome abort). Many of the eugenic practices are justified by using the example of preventing Down Syndrome. In 1967 the American

     Medical Association passed a resolution endorsing abortion in cases in which "an infant may be born with incapacitated physical deformities or

     mental deficiency" (4). A number of states approved this use of abortion years before Roe v. Wade followed suit with laws allowing abortion for the

     purpose of eliminating children with mental defects, including Down Syndrome. In 1995, the American College of Obstetricians and

     Gynecologists officially recommended Down Syndrome screening for all pregnant women ( 4). Prenatal screening is now in effect mandatory.

 

     What are the reasons used to justify the eugenic practices regarding Down Syndrome? Down Syndrome is not a terminal disorder. It does not

     need necessarily costly medical treatment. Most reasons that lead to an eugenic decision are not in fact medical reasons, but instead are

     societal, educational, perceptual, and conceptual reasons. In most countries, including Western countries, Down Syndrome is viewed as being a

     burden to society and to the family. It is also believed that having Down Syndrome ensures a low quality of life for the individual with Down

     Syndrome and his/her family.

 

     Western Societies use these ‘low quality of life’ and ‘burden’ arguments for many medicalized characteristics to justify their eugenic decisions.

     Interestingly women in India use these same arguments to justify their eugenic decision related to gender. It seems that as soon as we allow

     the use of quality of life/burden arguments that no line can be drawn anymore at any characteristic. And indeed at a conference in Melbourne,

     Australia on February 13, 1998, Bob Williamson, director of the Murdoch Institute for Research into Birth Defects in Melbourne, and Professor of

     Medical Genetics University of Melbourne, said

 

                    "We have to realize that most people in my experience have fairly clear views on what level of disability appears to them to be

                    consistent with a worthwhile outcome to themselves. I am actually irritated if people say, everyone thinks that condition is so

                    bad that we should have prenatal diagnosis and termination of pregnancy but condition y (e.g., cleft palate) isn't bad enough.

                    The truth is you can't say that in terms of a condition, you can only say it in terms of a woman, of her family, her perceptions,

                    her social context, her economic context and everything else. For some people cleft palate will be something they will be at

                    ease with, but for other people it will not be. The same is true for Down syndrome. We must avoid categorizing diseases as

                    severe or not severe. This can only be seen in the context of the overall holistic situation of a family and individuals. "(5)

 

                    

 

     Now, if we use Bob Williamson's logic, hemophilia, juvenile diabetes, dwarfism, and any other characteristics, traits (e.g. sexual orientation and

     gender) have to be included as the acceptance of every characteristic is based on the above mentioned circumstances. The Philosopher Philip

     Kitcher, in his book "The Lives to Come", (New York: Simon & Schuster, 1996), argues like Williamson in favor of a voluntary, "laissez-faire

     eugenics", in which families make their own decisions about what kinds of children they wish to bear and rear. This suggests that parents have

     autonomy and free choice.

 

     This leads us to question 3): is there such a thing as free choice and autonomy in eugenic practices?

 

     In many countries the first stumbling block for the credo of free choice and autonomy is the affordability of the treatment. As we have seen in

     the case of Cyprus and Sardinia, affordable treatment is not available. Therefore, who can blame a parent for making an eugenic decision to

     avoid the sure death of their child? You could say that the non-availability of a treatment coerced the parents into the eugenic decision. So if we

     want to talk about autonomy and free choice, we have to make sure that treatments are available.

 

     In his vision of voluntary eugenics, Kitcher presupposes a situation in which everyone is well educated about genetic disability and excellent

     support exists for those with disabilities. In order to make choices between alternatives, people need full and fair information about these

     alternatives, and adequate social, cultural, and financial support to act on several of the various alternatives. It is clear that these two

     conditions are not met, even in Western countries.

 

     The realities of raising a disabled child are mostly negative, not necessarily because of the child, but because the level of social acceptance of

     most disabilities is low, and economic supports are eroding. Predominant social values in North America encourage having few children but

     making each one a work of art. Further, Kitcher's vision of voluntary eugenics is also threatened by direct coercion of women. One study

     conducted by the Canadian Royal Commission on New Reproductive Technologies found that because of pressure from hospital staff, one in four

     pregnant women felt obliged to undergo amniocentesis (4). Of those who tested positive for a birth defect one in three believed she was more or

     less forced to have an abortion (4). So the answer to question 3 seems to be that there is no free choice and autonomy regarding eugenic

     practices, as the decisions are all embedded in the society surrounding the person.

 

     Now let's move to question 4): What is the impact of eugenic practices on human rights?

 

     A major consequence of eugenic practices on human rights is the emerging reality of an "Animal Farm" philosophy (Some are more equal than

     others). We are pitting one characteristic against another. Many people and organisations argue that to eugenize to deselect the characteristic

     female in India and elsewhere is unacceptable but to eugenize the characteristic disability is acceptable . This sentiment is reflected in a

     variety of legal/policy documents and statements (6-10)

 

     More and more statement oral and writing appear who claim that the search for a gay gene is wrong and tests should never be developed in the

     case the gay gene is found (11-13).

 

     In each of these cases the authors do not denounce the use of predictive testing and selective termination related to the characteristic

     disability. To the contrary we see arguments developed which try to draw the line between them (gender or sexual orientation ) and the others

     (disability).

 

     An expansion of these ideas can be found in Dr. Wolbring's paper, "Animal Farm Philosophy," to appear in a forthcoming issue of GENEWATCH]

 

     And even among disabled people we see a judgment based on a characteristic (my characteristic shouldn’t be part of eugenic measures but

     yours…)

 

     What we have here is the start of a war of the characteristics. Who will win and who will loose? On the surface the first battle line is around

     perception of characteristics and what remedies should be used for them. There are three options:

 

        1.A eugenic solution (change at the genetic level)

        2.A euthenic solution (change at the societal level)

        3.A euphenic solution (change at the personal level)

 

     Obviously women who denounce an eugenic solution for the female characteristic in India still want to help females. Only they think an

     eugenic solution (getting rid of the person or person-to-be with the characteristic female) is wrong. They advocate for an euthenic solution

     (changes within the environment women live in), to make society more accepting of women. Gays also denounce an eugenic solution that would

     destroy them and instead want an euthenic solution. For many gays even the suggestion of an euphenics solution (to cure them of being gay), is

     an untenable idea since they believe being gay is part of who they are, so to "fix" them shows a disregard for them.

 

     Deaf people, blind people, and dwarves think often in the same way as gays, that both eugenic and euphenic solutions are unacceptable. People

     who are labeled as disabled have been fighting for a long time for the social model of disability, in which their disability is viewed as a reflection

     of societal attitudes, the environment they live in. This would allow for euthenic solutions. But the reality is that disabilities are viewed in most

     countries within the medical model, which allows only for eugenic solutions. Euphenic solutions are NOT available in most cases.

 

     And now the circle is closing: euthenic solutions involve often human rights approaches. Eugenic solutions do not. Being targeted for eugenic

     solutions and the appearing Animal Farm Philosophy has quite a few consequences. It leads to a weakening of the involvement of any

     characteristic targeted for eugenics solutions in the human rights movement. And once prebirth eugenic solutions are established for one

     characteristic, there will be other consequences for this characteristic e.g. only 5% of disabilities in the Western world are determined prior to

     birth. To deal with disabilities appearing after birth we are establishing after birth eugenic procedures such as infanticide, DNR (Do not

     resuscitate) and euthanasia

 

     Summary

 

        1.Personal negative eugenics is the predominant use of eugenics today.

        2.Many legal and policy documents seem to encourage personal negative eugenic choices through laws where the only restraint is on sex.

        3.By making a distinction between gender and other characteristics, governments in essence tell people that some eugenic choices

          (elimination of disability) are acceptable and may be even expected, whereas others are not (sex selection). This is in essence the start of

          social eugenics.

        4.People are often coerced into personal negative eugenic decisions by the lack of support.

        5.There is no such thing as autonomous personal eugenic choice, at least not in most societies today.

        6.We have already established justifications for eugenic practices which do not allow us to draw a line anywhere.

        7.A war of characteristics is on, which will disenfranchise many characteristics from the human rights movement and from equality rights.

 

     This has to stop.

 

     

 

     Two clarification. Although I use the names of characteristics, people who have these characteristics often have diverse view .Not everyone

     thinks as outlined in this paper. And in my view so far it has not been proven that the gay gene exist. But the search continous.

 

     References

 

        1.Peter Singer Rethinking Life and death 1995 Oxford Press

        2.Unnatural Selection by Lois Wingerson 1998 Bantam book

        3.The Gene letter Volume 3, Issue 2, February, 1999 Dorothy C. Wertz

        4.Glover, NM., Glover, SJ., Ethical and Legal Issue Regarding elective Abortion of fetuses with Down Syndrome (1996) Mental Retardation,

          Vol 34;No.4 207 - 214

        5.Bob Williamson from a transcript of his speech

       6.World Health Organisation Draft guidelines on bioethics (see important document section on my webpage)

       7.ASHG Policy Papers and Reports (American Society for Human Genetics) see important document section on my

          webpage)

       8.COUNCIL OF EUROPE CONVENTION ON BIOMEDICINE AND HUMAN RIGHTS see important document section on

          my webpage)

        9.Canadian Gene/Reproductive Technology Bill C-47 (quoted in my article 'Submission to Health Canada Renewal of Canadian

          Biotechnology Strategy 1998' on my webpage)

       10.Pennsylvania Consolidated Statutes Annotated, title 18,[189]3204©, as amended November 17, 1989, P.L.592,No.68, [189] also cited in Ref

          12

       11.Times of London August 10. 1997

       12.Schuelenk U.,Stein E.,Kerin,J., and Byne, W., The Ethics of Genetic research on Sexual Orientation in Hastings Centre

          Report27 No4 (1997) 6-13

      13.Choosing the sexual orientation of children, Bioethics 1998, Vol12 Number 1