Download - Bioethics 4rd Lecture 27.02.2012

7/31/2019 Bioethics 4rd Lecture 27.02.2012

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Thoughts about Eugenics

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

A) The underlying issue in eugenics is that someone decides , based on statedor unstated valueswhich characteristics are worthy enough to be part of

society and which are not (Discrimination). This selection process is notbased solely on genetic composition. For example, elimination of a fetusbelieved to be exposed to thalidomideisbased on a phenotype.

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

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


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D) There are many ways to select or deselect the genotype/phenotypeof onesoffspring or of living members of society through

vPrefertilisation diagnosticsvPreimplantation diagnosticsvPrenatal testingvpost natal testingvIn-vitro fertilizationv

AbortionvSperm bankingvEgg bankingvCloningvInfanticidevFertilizationvAdoption or mate selection


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E) Eugenics occurs around the world because we discriminate against andeliminate unwanted characteristics (whether they are inherited or not), all thetime. We continually make choices in favor of a characteristic or against a

characteristic. The only difference is that the nature and extent of thecharacteristics we can choose to eliminate or selectively nurture is now increasingwith advancements in genetic knowledge and procedures.

F) Many procedures are not intrinsically eugenic but can be used for eugenicpurposes. For example, abortionper se is not eugenic, but can be used in an

eugenic fashion.


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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? Isthere a rational way to distinguish between e.g. Tay-Sachs, beta-Thalassemia,sickle cell anemia, thalidomide, Alzheimer, PKU, gender, sexual orientation (if away were ever found to predict it), mental illness, cystic fibrosis, cerebral palsy,spina bifida, achondroplasia (dwarfism), hemophilia, Down Syndrome, coronaryheart disease, osteoporosis, and obesity?

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


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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 orinfanticide,

(b) on the level of the gene carrier through testing of parents,prevention ofmarriage and prevention of conception.

Which level will be used depends on the cultural, societal, moral, and religious

background of the group.

Tay-SachsTay-Sachs is often used as an example tojustify eugenic measuresbecause most

people will not want to condemn a human being to a slow, painful death.

In Western countries the procedure is mostly on the level of the offspring; butthere are groups where it works on the level of the carrier(e.g., the Dor

Yeshorimprogram started in Brooklyn NY among Ashkenazi Jews).

But unlike Tay-Sachs, none of the other characteristics listed above result incertain deathif treated.


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Beta-ThalassemiaIn some countries, notably Sardinia (part of Italy) and Cyprus,premarital bloodtests for beta-thalassemia (a blood disorder leading to death in early adolescenceunless treated intensively) are widely applied in Cyprus they are mandatory.

Thalassemia is treatable, but theprocedure is very costly and has threatened to

bankrupt the entire health care system in both areas.

Although "unfavorable" test results showing thatboth partners are carriers does

not prevent them from marrying each other, people will nearly all follow aneugenic follow-up procedure: 25% on the level of the carrierand 75% on thelevel of the offspring .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 decisionregarding many genotypes/phenotypes (e.g. cystic fibrosis, hemophilia, insulin-dependent diabetes and many others). All of these conditions are deadly iftreatment is not provided.


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Down Syndrome

Down Syndrome is one of the all time favorite targets foreugenic elimination

(between 80-95% of people who learn that their baby might have Down Syndromeabort).

Many of the eugenic practices are justified by using the example of preventingDown Syndrome.

In 1967 the American Medical Associationpassed a resolution endorsing abortionin cases in which "an infant may be born with incapacitated physical deformitiesor mental deficiency" .

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 childrenwith mental defects, including Down Syndrome.


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

Most reasons that lead to an eugenic decision are not in fact medical reasons, butinstead are societal, educational, perceptual, and conceptual reasons.

In most countries, including Western countries, Down Syndrome is viewed asbeing aburden to society and to the family.

It is also believed that having Down Syndrome ensures a low quality of life for theindividual with Down Syndrome and his/her family.

In 1995, the American College of Obstetricians andGynecologists officially recommended Down Syndromescreening for all pregnant women ( 4). Prenatal screening is now

in effect mandatory.


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Western Societies use these low quality of life and burden arguments formany medicalized characteristics tojustify their eugenic decisions.

Interestingly women in India use these same arguments tojustify their eugenicdecision related to gender.

It seems that as soon as we allow the use of quality of life/burden arguments thatno 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 inMelbourne, 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 ofdisability appears to them to be consistent with a worthwhile outcome to themselves.I am actuallyirritated if people say, everyone thinks that condition is so bad that we should have prenatal diagnosisand 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 besomething they will be at ease with, but for other people it will not be. The same is true for Downsyndrome. We must avoid categorizing diseases as severe or not severe. This can only be seen in thecontext of the overall holistic situation of a family and individuals.


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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 beincluded 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 ofchildren they wish to bear and rear. This suggests that parents have autonomy and

free choice.