Health and the Law
Tay-Sachs Disease, Wrongful Life, and Preventive Malpractice WILLIAM J. CURRAN, JD, SMHYG A recent decision in New York has received considerable attention across the country among professionals interested in genetic counseling and the prevention of genetically related diseases. In Howard v. Lecher,' a majority (3-2) of the Appellate Division of the Supreme Court denied a cause of action against an obstetrician alleged to be negligent in not properly advising a couple about the dangers they were running, as potential carriers, in having a child afflicted with Tay-Sachs disease. The parents were of Ashkenazic Jewish origin. They did give birth to a child with such a condition. It was alleged that the obstetrician should have taken "a genealogical history" and should have advised the couple of available tests of themselves and later of the fetus which would have disclosed the condition. The couple said that had they known, they would have had an abortion. The couple sued for two types of damages: 1) their medical, hospital, and nursing bills, and funeral expenses; and 2) their own personal emotional distress in caring for the child and watching her slowly deteriorate and die over the 22 months of her life. The defendant, for some unexplained reason, appealed on only the second count for damages, thus conceding liability for the out-of-pocket expenses. The wide sweep of the Appellate Division opinion makes one feel that both counts would have been dismissed if appealed. In dismissing the second count, the majority of the Court cited previous New York decisions and cases in other states which had denied any action for "wrongful life." It was held to be the public policy of the State not to weigh the benefits and burdens of a life. The claim of the parents on their own behalf was held by the majority to fail on the same grounds. The Court was also evidently impressed with the effects of the current "malpractice insurance crisis" on physicians. They asserted that to place the duty on obstetricians as was demanded in this case would be "an unreasonable burden" and would open the court to fraudulent claims. The decision may be greeted with mixed feelings in the health care, preventive medicine, and genetic counseling fields. On one side, they may welcome the reluctance of the Court to extend malpractice vulnerability beyond its already
568
generous bounds in this country. On the other hand, they may regret the lack of an opportunity to impose a legal duty on physicians to engage in genetic counseling and the performance of easily administered and inexpensive tests on the couple and the fetus. Tay-Sachs is a horrible disease, undoubtedly of genetic origin, found largely among Ashkenazic Jews. Children affected with it are from birth under a literal sentence of early death. In the first months they may seem quite normal and healthy. At about 6 to 8 months, psychomotor deterioration begins to become evident and by I year to 18 months the child is paralyzed and blind, unable to eat, and constipated. Convulsions are common. There is often progressive head enlargement. Death usually occurs at between 3 and 5 years. This child lived only 22 months, but undoubtedly experienced the tragic and painful deterioration over the shorter life span. This story in New York did not end with this case. A lessnoticed case only two months later came to an opposite result in an opinion by a single justice in the trial term of the same Supreme Court.2 A legal duty to perform similargenetic counseling and preventive procedures was imposed upon obstetricians in a case where parents gave birth to a second child born with polycystic kidneys. The same obstetricians had delivered the couple's first child with the same condition. The suit concerned the second child which died after 2 /2 years of life. It was alleged that the obstetricians did not take the proper steps to counsel them about the dangers they were running, or to conduct necessary tests, or to perform or advise on an abortion. Also, it was alleged that the obstetricians fraudulently assured the couple that the dangers were not significant of having another defective child, all with the intent of inducing them to carry on the services of the obstetricians to deliver the baby. The single justice, Harold Hyman, determined that New York should now recognize an action for "wrongful life." He distinguished the Howard case above on the ground that in the case before him the parents were suing on behalf of the child for the child's own pain and suffering, not for their own emotional distress. He also asserted that he did not consider an AJPH June, 1977, Vol. 67, No. 6
PUBLIC HEALTH AND THE LAW
award of damages against the obstetricians an unreasonable burden on obstetricians or physicians for malpractice in not preventing this life. Justice Hyman's result may please some readers, but his legal logic is difficult to follow. His distinction of the Howard case is a distinction without a difference. The dead child in no way participated in bringing this action (as they did in some other "wrongful life" cases where the persons were alive). An award can only benefit the parents. (In fact, Justice Hyman generously allowed, on his own motion, the correction of the complaint to appoint the parents as "administrators" of the child's "estate" to assure exactly that result.) Furthermore, the fraud alleged in the complaint was a fraud against the parents, not the child. It cannot support the child's independent action. The Park case (Justice Hyman's opinion) is also more difficult to reconcile with earlier refusals in New York to recognize "wrongful life" than the Tay-Sachs case where the parents weren't really asking for such a ruling. They were seeking independent damages for their own quite genuine, severe emotional suffering. The Howard court did, after all, allow the case to stand for payment of out-of-pocket expenses of the parents.
I
Justice Hyman also based his opinion on the theory that life begins at conception and that from that moment on the fetus has "the rights of a human being." This statement is a strange support for a case recognizing "wrongful life" on the allegation of the fetus (represented by the parents) that it should never have been born. The U.S. Supreme Court in the abortion decisions3 refused to recognize the fetus as a "person" under 14th Amendment protection and did recognize superior rights in the woman to an abortion, at least up to the point of viability. The parents would have had to accept this theory in order to have the legal right to abort the fetus with Tay-Sachs disease. The law in New York and the legal obligations of obstetricians in the genetics field are now badly clouded by these decisions. We may well expect further litigation in New York and elsewhere on these greatly important issues of what might be called preventive malpractice.
REFERENCES 1. Howard v. Lecher, 386 New York Supp., 2nd Ser. 460 (1976) 2. Park v. Chessin, 387 New York Supp., 2nd Ser. 204 (1976) 3. Roe v. Wade, 93 S. Ct. 705 (1973); Doe v. Bolton, 93 S. Ct. 739
(1973)
Good Health
In its broadest sense, health means more than just the absence ofillness; it means a pleasant journey through life. Colter Rule. A Traveler's Guide to Good Health, Garden City, NY: Doubleday & Co., Inc., 1960, p. 170. Ed. Note: The Journal is grateful to Dr. Fred B. Rogers for this contribution to its pages.
AJPH June, 1977, Vol. 67, No. 6
569
Tay-Sachs Disease, Wrongful Life, and Preventive Malpractice WILLIAM J. CURRAN, JD, SMHYG A recent decision in New York has received considerable attention across the country among professionals interested in genetic counseling and the prevention of genetically related diseases. In Howard v. Lecher,' a majority (3-2) of the Appellate Division of the Supreme Court denied a cause of action against an obstetrician alleged to be negligent in not properly advising a couple about the dangers they were running, as potential carriers, in having a child afflicted with Tay-Sachs disease. The parents were of Ashkenazic Jewish origin. They did give birth to a child with such a condition. It was alleged that the obstetrician should have taken "a genealogical history" and should have advised the couple of available tests of themselves and later of the fetus which would have disclosed the condition. The couple said that had they known, they would have had an abortion. The couple sued for two types of damages: 1) their medical, hospital, and nursing bills, and funeral expenses; and 2) their own personal emotional distress in caring for the child and watching her slowly deteriorate and die over the 22 months of her life. The defendant, for some unexplained reason, appealed on only the second count for damages, thus conceding liability for the out-of-pocket expenses. The wide sweep of the Appellate Division opinion makes one feel that both counts would have been dismissed if appealed. In dismissing the second count, the majority of the Court cited previous New York decisions and cases in other states which had denied any action for "wrongful life." It was held to be the public policy of the State not to weigh the benefits and burdens of a life. The claim of the parents on their own behalf was held by the majority to fail on the same grounds. The Court was also evidently impressed with the effects of the current "malpractice insurance crisis" on physicians. They asserted that to place the duty on obstetricians as was demanded in this case would be "an unreasonable burden" and would open the court to fraudulent claims. The decision may be greeted with mixed feelings in the health care, preventive medicine, and genetic counseling fields. On one side, they may welcome the reluctance of the Court to extend malpractice vulnerability beyond its already
568
generous bounds in this country. On the other hand, they may regret the lack of an opportunity to impose a legal duty on physicians to engage in genetic counseling and the performance of easily administered and inexpensive tests on the couple and the fetus. Tay-Sachs is a horrible disease, undoubtedly of genetic origin, found largely among Ashkenazic Jews. Children affected with it are from birth under a literal sentence of early death. In the first months they may seem quite normal and healthy. At about 6 to 8 months, psychomotor deterioration begins to become evident and by I year to 18 months the child is paralyzed and blind, unable to eat, and constipated. Convulsions are common. There is often progressive head enlargement. Death usually occurs at between 3 and 5 years. This child lived only 22 months, but undoubtedly experienced the tragic and painful deterioration over the shorter life span. This story in New York did not end with this case. A lessnoticed case only two months later came to an opposite result in an opinion by a single justice in the trial term of the same Supreme Court.2 A legal duty to perform similargenetic counseling and preventive procedures was imposed upon obstetricians in a case where parents gave birth to a second child born with polycystic kidneys. The same obstetricians had delivered the couple's first child with the same condition. The suit concerned the second child which died after 2 /2 years of life. It was alleged that the obstetricians did not take the proper steps to counsel them about the dangers they were running, or to conduct necessary tests, or to perform or advise on an abortion. Also, it was alleged that the obstetricians fraudulently assured the couple that the dangers were not significant of having another defective child, all with the intent of inducing them to carry on the services of the obstetricians to deliver the baby. The single justice, Harold Hyman, determined that New York should now recognize an action for "wrongful life." He distinguished the Howard case above on the ground that in the case before him the parents were suing on behalf of the child for the child's own pain and suffering, not for their own emotional distress. He also asserted that he did not consider an AJPH June, 1977, Vol. 67, No. 6
PUBLIC HEALTH AND THE LAW
award of damages against the obstetricians an unreasonable burden on obstetricians or physicians for malpractice in not preventing this life. Justice Hyman's result may please some readers, but his legal logic is difficult to follow. His distinction of the Howard case is a distinction without a difference. The dead child in no way participated in bringing this action (as they did in some other "wrongful life" cases where the persons were alive). An award can only benefit the parents. (In fact, Justice Hyman generously allowed, on his own motion, the correction of the complaint to appoint the parents as "administrators" of the child's "estate" to assure exactly that result.) Furthermore, the fraud alleged in the complaint was a fraud against the parents, not the child. It cannot support the child's independent action. The Park case (Justice Hyman's opinion) is also more difficult to reconcile with earlier refusals in New York to recognize "wrongful life" than the Tay-Sachs case where the parents weren't really asking for such a ruling. They were seeking independent damages for their own quite genuine, severe emotional suffering. The Howard court did, after all, allow the case to stand for payment of out-of-pocket expenses of the parents.
I
Justice Hyman also based his opinion on the theory that life begins at conception and that from that moment on the fetus has "the rights of a human being." This statement is a strange support for a case recognizing "wrongful life" on the allegation of the fetus (represented by the parents) that it should never have been born. The U.S. Supreme Court in the abortion decisions3 refused to recognize the fetus as a "person" under 14th Amendment protection and did recognize superior rights in the woman to an abortion, at least up to the point of viability. The parents would have had to accept this theory in order to have the legal right to abort the fetus with Tay-Sachs disease. The law in New York and the legal obligations of obstetricians in the genetics field are now badly clouded by these decisions. We may well expect further litigation in New York and elsewhere on these greatly important issues of what might be called preventive malpractice.
REFERENCES 1. Howard v. Lecher, 386 New York Supp., 2nd Ser. 460 (1976) 2. Park v. Chessin, 387 New York Supp., 2nd Ser. 204 (1976) 3. Roe v. Wade, 93 S. Ct. 705 (1973); Doe v. Bolton, 93 S. Ct. 739
(1973)
Good Health
In its broadest sense, health means more than just the absence ofillness; it means a pleasant journey through life. Colter Rule. A Traveler's Guide to Good Health, Garden City, NY: Doubleday & Co., Inc., 1960, p. 170. Ed. Note: The Journal is grateful to Dr. Fred B. Rogers for this contribution to its pages.
AJPH June, 1977, Vol. 67, No. 6
569
