CCAR RESPONSA
Linkage Analysis
5752.6
She’elah
A new form of genetic called linkage makes use of genetic markers near the gene of interest, to make predictions about the probability that the fetus has inherited a genetic disorder. This has been used for the prenatal prediction of a number of childhood disorders (such as cystic fibrosis, the muscular distrophies) and to predict such conditions as Huntington Disease and susceptibility to chronic diseases (cardiovascular, neuropsychiatric, cancerous) that may develop at a later stage of the individual’s life. The following questions have been asked by the researcher:
1. Should such a testing which only provides probability of odds and does not establish definite be used for the prenatal detection of genetic diseases and possible abortion of fetuses found to have a high likelihood of having inherited the disorder?
2. Successful use of the technique often requires the genetic testing of other members of the family in order to determine what markers are present and how they are organized in the individual seeking information. Do other family members have an obligation to participate in this testing when, as a result, they may discover that they are a carrier or likely to develop a genetic disorder?
3. Should genetic testing be done for disorders that develop later in a person’s life and for which there is currently no effective treatment or cure as in Huntington Disease or Alzheimer’s Disease?
Teshuvah
New trends in scientific research about the components of the human genome and of their organization and function are laying the foundation for considerable scientific advances and, at the same time, engage our concern about their impact on social and individual ethics. The field of new medical frontiers is constantly expanding, and whatever answers we may be able to provide will themselves raise additional questions.1 We do not, in this teshuvah, aim at a comprehensive analysis of all the issues involved, but will rather attempt to set them into the framework of Jewish concerns.
Summary of Halakhic Precedents.
We stand in the tradition of the Rambam (Moses Maimonides, 1135-1204) who set the model for combining Jewish insights with scientific and metaphysical inquiry. He stressed wonder and modesty as starting points of any inquiry:
When we reflect on these [wondrous] things…and realize the divine wisdom manifested in them all, our love for God will increase, the soul, the very flesh will yearn to love God. We will be filled with fear and trembling as we become conscious of our own lowly condition.2
Basing himself on scriptural verses and talmudic precedents, he reaffirmed our obligation to apply the divine gift of human intelligence to explore nature and use its resources for the art of medicine, and that it was a mitzvah to heal and to be healed.3
Physicians are therefore expected to use their art to heal through the means provided to them by nature. Indeed, to refuse to heal was compared to shedding blood.4 In this way the pursuit of modern science to widen the opportunities for healing are urged upon us as a mitzvah, and Liberal Judaism fully supports this traditional demand.5
Response to the Questions.
1. The acquisition of new medical insights therefore has solid support. Even though the result of testing provides us currently and perhaps inherently not with certainties but only with odds, we consider this an important and permissible inquiry. Knowledge is open-ended, and because human foresight will always be limited, certainties will elude us in any case in most areas of knowledge.
But, asks the questioner, how do we deal with the added probability that the odds will stimulate people’s desire for children with a minimum of medical problems and therefore will choose abortion if there is any question?
Jewish tradition countenances abortion under certain conditions,6 and Reform tradition has dealt with it on a number of occasions.7 Thus, we have permitted abortion when results of aminocentesis for Tay-Sachs Disease suggested its desirability.8
Generally, we would support decisions on an individual basis. Some families thrive on crisis situations, others break down; one woman reacts differently from another. The possibility that the test results may lead to some abortions is not, in our view, reason to abstain from research in this area altogether. As its methods are refined and the odds for accurate predictions increase, the necessity for more and more difficult moral decisions will also increase. Indeed, the application of new knowledge will frequently present us with new problems.
2. Members of the family, like all members of the human family, have an obligation to save life. The Rambam phrased it succinctly:
A person who is able to save another and does not do so transgresses the commandment “Do not stand idly by the blood of your neighbor” (Lev. 19:16).9
But the saving of life is not at stake here. In linkage analysis the family would be asked to undergo testing so that the physician can more accurately analyze the genetic markers and so that, thereupon, one or several members of the family might make an informed decision about unborn children. This can hardly be classified as saving life; hence no one is obligatedto participate in the testing.
We would consider it the physician’s duty to inform all members of the family about the process and, if they do consent to participate, the doctor in turn would be obligated to make the results of the testing available to them if they wish it.10 Thus, they may consent to be tested, yet not desire to know the outcome. They have a right to this refusal, for linkage analysis does not at this point provide them with opportunities for bettering their own health (in which case the answer could be different).
3. As long as there is no effective treatment for certain diseases, testing would provide information only, and little more. Some persons may wish to obtain it, but with resources already limited we doubt that it would be freely available under such circumstances. If, on the other hand, there are familial links to people who have been tested positively, the situation might change. In such cases the information might serve the mental well being of the patient seeking the information. Healing through information may in fact become a new frontier of the medical arts.
Notes
See H. J.. Evans, New Trends in Human an Introduction and an Overview, Experientia, 42:10, p. 1069. Funding for the Human Genome Project has recently been curtailed in the United States, but it remains a formidable project. See Marc Lappi, Genetics, Neuroscience and Biotechnology, Hastings Center Review, Nov./Dec. 1990, p.21. Yad, Yesodei Ha-Torah 4:12; see also Maharil (R. Jacob b. Moses of Moelln), Netivot Olam, 14. The biblical proof text is usually found in Exod. 21:19, where the double use of the word heal (rappo yerappe) is taken to mean he shall surely heal. However, the Rambam preferred to rely instead on Deut. 22:2; see his commentary on M. Nedarim 4:4. Sh. A., YD 336:1, and see Turei Zahav. We may note here the problem which medieval scholars faced when they were confronted with certain medical practices of Babylon which are recorded in the Talmud. Could such prescriptions be overridden in the light of newer medical insights? They managed to set aside the rules of the ancients by saying that they were no longer understood. See, for instance, the question whether bleeding is beneficial: BT., Shabbat 129a; Yad, Hilkhot . De’ot, 4:18; and also the Rambam’s Responsum on the Length of Life. See Fred Rosner, Modern Medicine and Jewish Ethics, pp. 161-171. See Walter Jacob, Contemporary American Reform Responsa, # 16, pp. 23-27. We will not here rehearse these discussions. To be sure, our generally liberal attitude as to what constitutes a threat to the mother’s health (which is the prerequisite for permission to abort) would favor the mother’s right to make an informed choice, but this is not equivalent to endorsing the unlimited Pro-Choice position in the current political controversy. R. Eliezer Waldenberg, Tzitz Eliezer, vol. 13, #102, also takes this position, but would not permit abortion when the presence of Down’s Syndrome is discovered in the fetus. Yad, Hilkhot. Rotze’ach 1:14. While the biblical verse was usually understood in this manner (so, for instance, does Rashi), there is some doubt as to its real meaning. The translation of the Jewish Publication Society suggests that the Hebrew probably means that we should not profit from our neighbor’s misfortune. See A. S. Avraham, Nishmat Avraham, YD 338, # 3; also Prof. Shimeon Glueck in Sefer Asya, April 1987, pp. 8-11.
If needed, please consult Abbreviations used in CCAR Responsa.