The Joseph and Rose Kennedy The Kennedy Institute Volume 4, Number 1 Institute for the Study Georgetown University of Human Reproduction Washington, D.C. 20057 and Bioethics Quarterly Report Winter 1978

Mrs. Rose Fitzgerald Kennedy Receives Honorary Degree

Mrs. Rose Fitzgerald Kennedy was Many were the well-wishers who gathered Kennedy’s years in London when Joseph presented an honorary degree of in Gaston Hall to witness the P. Kennedy was the American Ambassador Doctor of Humane Letters on October ceremony, while others—unable to be to the Court of Saint James. 1, 1977, by the Rev. Timothy S. there—sent their best wishes. Mrs. Pope Paul VI conferred the Apostolic H ealy, S.J., President of Georgetown Kennedy received personal congratulations Blessing on Mrs. Kennedy. University. It was an extraordinarily from President Jimmy Carter warm and inspiring occasion solely and his regrets that he was unable to devoted to recognizing a woman who attend. Mr. Norman St. John-Stevas, The citation read by Dr. Andre E. has worked many, many years at member of Parliament, brought the Hellegers, M.D., Director of Georgetown bringing hope and understanding to best wishes of the Queen Mother and University’s Kennedy Institute, the mentally retarded. her fond remembrances of Mrs. Ken- spoke of Mrs. Kennedy’s inner strength that she directed toward parenting a large family, which in this more technological age might be called “intensive care”. Dr. Hellegers Mirth . . . and . . . Good Cheer continued that “Faced with the grief- shared by many millions of other parents of knowing one of her children to be mentally retarded, she chose, unlike so many of her contemporaries , not to hide the fact. Rather she turned this affliction into the occasion for beginning a crusade on behalf of all others similarly afflicted . It is this crusade which this University particularly wishes to honor today. Through the establishment of institutions for care and research and institutions reflecting on ethical problems relating to such care and research, Mrs. Kennedy has given hope to countless millions here and abroad. Today we see school children and college students, sports stars and public figures no longer shying away from the mentally retarded, but working on their behalf in Special Olympic games, in legislatures, in hospitals and in homes. They have derived inspiration from her quiet leadership.” Senator Edward M. Kennedy spoke for his mother after she received her degree. “On behalf of my mother,” he said, “I am honored to accept the degree that Georgetown University has so graciously and eloquently conferred on her this morning. Speaking for the three generations of the Kennedy During the Degree Ceremony family who are gathered here, I express the deep gratitude of all the Kennedys and Fitzgeralds and Shrivers and Smiths and Lawfords—and unto Mr. Sargent Shiver, Mrs. Patricia Lawford, Mrs. Jean Smith and Mr. Steven Smith witness the honoring of Mrs. Kennedy by Georgetown University.

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the 29th grandchild—for this extra- ordinary honor and recognition the University has given to our mother. “Because of mother and her devotion to our sister, America is shedding its degrading medieval attitudes toward the retarded. Because of Rose, a black child in Bedford-Stuyvesant has hope beyond the ghetto. Because of Rose, a Spanish Jesuit with a degree from Georgetown is teaching ethics and child development at the University of Barcelona. Because of Rose, hundreds of thousands of retarded children have won the right to play, as they swim and run and jump and skate and throw a ball in their own Olympic Games in their own communities. “Our family is especially proud of the close ties we have established with Georgetown University. The Joseph and Rose Kennedy Institute for the Fr. Healy hosted a reception in his office . . . Study of Human Reproduction and Bioethics, established on this campus, is the culmination of mother’s dream. The Institute is bringing help and hope to those who are mentally retarded . It is breaking new ground in dealing with the complex scientific, medical and ethical challenges involved in the care and prevention of this affliction. “Three distinguished scholars of philosophy , theology, and medicine hold the Georgetown University chairs that are named for my parents and my sister Rosemary. We are proud of the Kennedy Institute and its emerging role in building better bridges between . . . Fr. Kelley sheltered Mrs. Kennedy from science and the humanities. For us, the rain. The Hon. Norman St. John-Stevas, speaking at the “Dean’s Office Seminars”. 4 this University is the ideal setting for Dr. Jerome Lejeune, discoverer of the the Institute, with its outstanding British Member of cause of Down’s Syndrome, or Mongolism facilities for medical care and research Parliament and , spoke before an audience of and its equally outstanding religious Georgetown University’s School of tradition.” French Geneticist Medicine on September 29th. Dr. Le Speak at Georgetown jeune’s lecture was entitled, “The Upon the conclusion of Senator Kennedy's Congruence Code; an Essay on Mutual remarks, Mrs. Rose Kennedy Recognition Between D.N.A. and Pro- spoke. Her diminutive figure was al- teins,” and was part of the annual most hidden by the podium but her The Hon, Norman St. John-Stevas, Rose Fitzgerald Kennedy Lecture Series voice rang out to the audience. Member of Parliament, Great Britain, for 1977. “Everybody has cooperated so very and Dr. Jerome Lejeune, Paris, generously with what I wanted to France, were featured lecturers this Dr. Lejeune is a member of the Insti do,” she said. “We’ve had the support fall on the Georgetown Campus. As tute of Procreation at the University of you people when we were doing members of the Kennedy Institute’s of Paris, and is one of the pioneers in this work with the retarded children. International Advisory Board, they locating genetic causes of mental retardation I want to express that very strongly were in Washington, D.C., attending . Dr. Lejeune is a past winner because we couldn’t have done half the Fourth Biennial Meeting of the of the Kennedy International Award of what we’ve done if it hadn’t been Board, as well as participating in Mrs. for his work in mental retardation. for the cooperation and the interest Rose Fitzgerald Kennedy’s Honorary and the work of the people whom we Degree Ceremony. have met in different countries. All over the world people have respon- Mr. Norman St. John-Stevas spoke on ded—in South America, or in Europe, September 29th before a select group all over the world.” of faculty and students as part of the “Dean’s Office Seminars” conducted Speaking directly to the young by Dean Peter Krogh of the George­ people especially the Georgetown town School of Foreign Service. Mr. students and her many grandchildren Stevas’ topic was “Great Britain and Mrs. Kennedy encouraged the World Today.” them in the spirit of volunteerism to personally help handicapped children. Mr. Stevas is a noted author and journalist and has written numerous “If some of your children would books, such as Obscenity and the volunteer to help these children in the Law; Life, Death and the Law; The summer it would be very good for Right to Life; and The Agonising them to realize how much, how many Choice, as well as a number of volumes abilities they have themselves and how on the work of Walter Bagehot. thankful they should be. It would give Mr. Stevas now serves as the Minister them an opportunity to help these for Education and the Arts in the others, which is a great satisfaction.” Conservative Shadow Cabinet of Great Britain. 5

Yet not only do the physically or offers; others may be too violent. One Man’s mentally weak suffer from such In any case, the essential factor is that feelings of rejection, loneliness, and the community and applicant respond Search worthlessness, he continued. The to each other’s needs. stronger, more “normal” members of society are also subject to similar New members entering the community Jean Vanier, Ph.D., is the founder feelings. Dr. Vanier felt it was his duty find something they have not and director of “L’Arche”, a community to expose persons to their own weaknesses known for a long time, indeed if ever for mentally handicapped adults and vulnerability, and insisted before. That is, they learn they are and those who assist them. Since its that “we are frightened of ourselves trusted. In Dr. Vanier’s opinion, it is founding in the early 1960’s, interest because we have not learnt to accept because the mentally retarded have in this community has burgeoned until who we are.” “Touching a weakness,” never been trusted or confidently are now over forty similar communities he said, “is finally touching a light.” accepted by society that they withdraw around the world. so desperately, and they may not In the second lecture, Dr. Vanier know how to react, nor how to trust Dr. Vanier delivered two lectures in stressed that the source of weakness their own wounded instincts. L’Arche October as part of the Rose Fitzgerald was also a source of strength. “To enables the new member to abandon Kennedy Lecture Series, held on the love,” said Dr. Vanier, “is the most some of his old defenses and live with Georgetown Campus. dangerous of realities, because to love others in the community in an open is to share your heart, and to share and Christian exchange of feelings and Dr. Vanier’s first lecture was entitled, your heart, you risk losing it.” He ad- experiences. As Dr. Vanier says, “Com- “Hope for Humanity,” and was an vised that, “it is only once we have integrated munity living is a process of moving examination of the weakness and our weaknesses that we from egotism to love.” This is what loneliness of humanity, especially of become a whole person.” L’Arche hopes each new member will the world’s totally defenseless indi achieve: the ability to love. viduals-the mentally retarded, the Dr. Vanier is actively involved in an Deborah Drayer mentally ill, and the severely handicapped international program to help the . Dr. Vanier emphasized that weak and handicapped people of the society is callous to the most sensitive world by creating small communities and defenseless of its members, and with homes ranging from two-member lamented that there were incomprehensible city apartments to fourteen-member cruelties inflicted upon these rural homes. For an individual to be poorest and most innocent of God’s accepted by one of the communities creatures. For these “...wounded he or she must make three different people, oppressed people, hurt people, trial visits. The first trial period starving people,” he lectured, “our lasts for fifteen days, the second for a world is a terrible place.” month, and the third for three months, This time allows a team of assistants to decide whether they can cope with the applicant. Occasionally, persons from more rigid institutions cannot adjust to the freedom that L’Arche Deborah Dawson, M.A.

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is imminent. The crude birth rate for In addition, large numbers of women Another the twelve month period ending in born during the baby boom years of July 1977 was 15.2, substantially the middle and late 1950’s are now higher than the rate of 14.6 recorded entering the 15 to 24 year old age Baby for the year ending in July 1976. Does bracket in which reproduction has this increase represent the beginning traditionally been concentrated. This of another “baby boom”? disproportionate share of women in Boom? the younger reproductive years, coup- In 1975, California demographers led with the phenomenon of women Beth Berkov and Jane Sklar suggested in their late twenties and early thirties that the American birth rate had making up postponed births, accounts Fertility has declined dramatically in “bottomed out”. On the basis of fertility for the prediction of increasing fertility the United States during the past data for several states including rates. twenty years. The crude birth rate California and for the United States as (the number of births per 1,000 total a whole, they concluded that fertility This potential increase in fertility does population) fell from 25 in 1957 to rates would be likely to increase substantially not signal an increase in the average only 15 in 1976. The decrease in the in the near future. According completed size of American families. general fertility rate (number of births to Berkov and Sklar, the likelihood Rather, it is a “timing event”, representing per 1,000 women aged 15 to 44) has of increasing fertility rates is indicated the convergence of two forces: been even greater: from 123 in 1957 by the discrepancy between an irregular age distribution of women to 67 in 1975. Since 1972, the total the observed low fertility of young in the childbearing years due to the fertility rate—a hypothetical measure American women and their expectations baby boom of the 1950’s, and changing which estimates the number of children concerning family size. patterns with regard to the timing which would ultimately be born of births. to a group of 1,000 women if they continued to reproduce at the rates They pointed out that by 1974 almost Most demographers, however, feel observed in a given year — has continually one third of all U.S. women under age that these forces will not be sufficient fallen below the replacement level 30 who had ever been married were to bring about rapid, significant in- of 2,100, the rate required to sustain a still childless, whereas only sixteen per creases in fertility rates in the United state of “zero population growth”. In cent of all married women under age States. Although fertility must in- 1975, the total fertility rate was only 30 expected to have less than two crease to at least the replacement level 1770.3. If the low levels of fertility children. Berkov and Sklar concluded and temporarily beyond to yield even currently observed in the United that “for the most part currently the small families currently expected States were to be maintained childless young women have postponed by U.S. women, there is no evidence indefinitely, we would ultimately but do not plan to give up that fertility rates will increase with reach a state of negative population having children. If these young women the rapidity and to the levels experienced growth; that is, the U.S. population are to realize their desires and in the 1950’s. Campbell Gibson would begin to decrease. expectations with regard to family , Chief of the Population Projections size, they cannot postpone childbearing Branch of the U.S. Census Bureau It is not surprising, then, that demographers much longer. Within the next few , recently argued that “neither an set a high priority on the estimation years many will have to begin ‘making immediate nor a dramatic increase in of future fertility levels. up’ the births they delayed in previous fertility will be required during the There is already widespread debate as years.” next few years for young married to whether an increase in U.S. fertility "How accurate are birth expectations and intentions in predicting actual levels of fertility?"

7 women to realize their family size ex- Since birth expectation data have percent had succeeded in not having pectations.” been collected for national samples more. The remaining twelve percent only in recent years, there is little evidence had had more children in the interim Attempting to refute Berkov and with which to assess their predictive due to a change of intention (26 per- Sklar’s arguments, Gibson pointed out value. Two recent studies, cent) or by accident (74 percent). that despite the fact that only 16 per- however, which have compared birth cent of all married women under age expectations with subsequent fertility On an aggregate basis, intended and 30 in 1974 expected to have less than on both the individual and aggregate achieved fertility corresponded more two children, the average number of levels offer some basis for evaluation closely. Approximately 40 percent of births expected by these women was of birth expectation data. the total 2,361 women included in only 2.25 due to the very small proportion this study intended in 1970 to have of women expecting four or In 1975, Charles Westoff and Norman more children. By 1975, 34 percent births. After adjusting for the Ryder re-interviewed 2,361 women had actually done so or were pregnant fact that unmarried women under age who had been interviewed in the 1970 at that time. Thus their fertility intentions 30 in 1974 (some of whom will never National Fertility Study. In 1970 exceeded their subsequent performance marry) will have lower fertility than these women were asked whether they by about six percentage those who were currently married, the intended to have more children (or points. This discrepancy will, in time, average number of births expected by any children in the case of women be further reduced as additional women all women aged 18 to 29 in 1974 was who were childless at that time). Each who had postponed their births only 2.1 According to Gibson, these woman’s response to this question was or been unable to conceive by 1975 lifetime fertility expectations can be pre-coded onto the questionnaire used do have the children they intended. realized with only a moderate increase to re-interview her in 1975. If her fertility in the annual total fertility rate over behavior in the intervening five In a recent study of CPS data, Martin the next decade given current trends years was inconsistent with her intention O’Connell and Maurice Moore of the in the timing of childbearing, and with in 1970, she was specifically asked Census Bureau found a similar correspondence virtually no change in fertility rates if why she had not fulfilled her fertility between expected and achieved the mean age at childbearing were to intentions. fertility levels. In the June increase significantly, i.e., to an ultimate 1971 CPS, currently married women level of age 28 by 1985. Gibson Of the 957 women who in 1970 did aged 14 to 39 were asked how many concluded that the time required for intend to have more children, approximately children they expected to have in the fulfilling the fertility expectations of two thirds (66 percent) had next five years. Five years later in the young American women is too variable done so while the remaining 34 per- June 1976 CPS, all ever-married women to permit the prediction of a rise cent had not yet had more children. aged 14 to 59 were asked how in fertility rates. Of the latter, about 70 percent re- many children they had borne in the ported having changed their minds preceding five years. Although Berkov and Sklar’s conclu about wanting another birth, mostly sions differ from Gibson’s, their reactive for financial reasons. Seven percent The average number of additional arguments both rely strongly had postponed the intended birth and children expected by women aged 14 expected family size as a predictor the remaining 23 percent had been to 39 in 1971 was .497. The average of fertility behavior. How accurate unable to conceive. number of children borne by women are birth expectations and intentions in these cohorts between 1971 and in predicting actual levels of fertility? Of the 1,404 women who in 1970 did 1976 was .447. For women aged 18 to not intend to have more children, 88 "The most conservative approach to predicting future fertility rates is to rely on birth expectation data for short term projections."

29 in 1971, their fertility expectations births expected by individuals or cohorts force due to the limited number of exceeded their actual performance by of women are subject to change workers available in these cohorts. As ten percent or more. For women aged throughout the childbearing years. In a result their average economic status 14 to 17 in 1971, the overestimate assessing the predictive value of birth as young adults will be high and these was of a lesser magnitude, and women expectations, O’Connell and Moore cohorts will bear relatively large numbers aged 29 to 30 in 1971 had slightly noted that expectations concerning of children who will be raised in more children than they had expected fertility “are not resistant to the realities an atmosphere of relative affluence. . O’Connell and Moore concluded of unplanned pregnancies, the fecundity When the children born to these cohorts that “there is little, if any evidence at of the couple, and crucial reach adulthood themselves and this point in time to suggest that the changes in life status and goals.” enter the labor force, the large num­ data of the 1967 and 1971 Current ber of competing workers will lower Population Surveys will understate Because of the mutability of birth expectations the average worker’s wage. Thus, the eventual levels of completed cohort , demographers have sought economic status of the children upon fertility. The likelihood now is that, in other predictors of individual and cohort marrying will be low relative to what the final analysis, the 1967 and 1971 fertility. Among the most widely they experienced when growing up. In averages will be seen as overstate- accepted of these alternative methods order to maintain the standard of living ments.” for predicting fertility is Richard East to which they are accustomed, erlin’s economic hypothesis of child- they will have relatively low levels of On the whole, the findings presented bearing. According to Easterlin, individuals fertility, thereby returning to the beginning by Westoff and Ryder and O’Connell form their standards with regard of the cycle. and Moore argue strongly in favor of to consumption patterns while the validity of birth expectations as growing up. Their economic status According to Easterlin and his advocates predictors of subsequent achieved fertility when married relative to that they experienced , both the baby boom of the on a short term, aggregate basis. while growing up determines 1950’s and the low levels of fertility To the extent that expectations have the number of children they feel they currently observed in the U.S. can be differed from behavior (and the differences can afford. Couples who are better off explained in terms of this relative in- have been relatively small), it financially when married than when come hypothesis. If future fertility levels has been in the direction of overestimating growing up will have higher levels of in the United States adhere to the subsequent births. Thus, the fertility than couples whose financial cyclical pattern described by Easter continued low fertility expectations status is poorer than that to which they lin, fertility rates should begin to rise reported by American women are interpreted were accustomed when growing up. in the early or mid 1980’s as children by most demographers as born in the “baby bust” years of the evidence that U.S. fertility rates will On the average, couples born during late 1960’s and 1970’s begin to reproduce not rise dramatically in the near future periods of low fertility will experience . Dr. Donald Lee of the Population . higher economic status in adult life Study Center at the University of Michigan than couples born during periods of predicts that the fertility rates In terms of permitting long range fertility high fertility, because wages will be of these cohorts will peak in the 1990’s, projections, however, birth expectation inversely related to the number of reaching an ultimate level of 2.7 children data may prove to be unsatisfactory workers entering the labor market. per woman. Unlike the increasing . Birth expectations and intentions Thus, fertility levels will always be cyclical fertility rates predicted by Berkov and are influenced by a host of according to Easterlin’s hypothesis Sklar, which have been described as a economic, social and psychological : Birth cohorts born during periods timing phenomenon, the fluctuations factors. As a result, the number of of low fertility will command in fertility described by Easterlin rep- high wages when they enter the labor 9 resent real changes in average completed Current Population Reports, Series P-20, No. 301. family size with long range implications Washington: U.S. Government Printing Office, Older Americans for population growth. 1976. United States National Center for Health Statistics. in 1990 “Advance Report: Final Natality Statistics, 1975.” Although the existence of fertility Monthly Vital Statistics Report 25 (10) Suppl.: cycles is supported by U.S. data for 1-19, 1976. “What will be the size and characteristics the past forty years, there is no evidence United States National Center for Health Statistics. to date that the relative income “Provisional Statistics: Births, Marriages, Divorces, of the older population in theory can predict the magnitude of and Deaths for July 1977.” Monthly Vital Statistics 1980, 1985 or 1990?” is the question these fluctuations in fertility rates or Report 26 (7): 1-11,1977. being asked by Beth Soldo, Ph.D. In a even the overall direction of the fertil Westoff, Charles, and Ryder, Norman B. “The Predictive newly funded study begun October 1 ity level around which the fluctuatio Validity of Reproductive Intentions.” Paper of this year, the Kennedy Institute’s ns center. Until Easterlin’s theory presented at the annual meeting of the Population Center for Population Research will has been tested under a wider variety Association of America, 1977. begin to investigate this area of of circumstances, it cannot be considered concern that has far reaching implications as valid a predictor of fertility to state, area and federal as are birth expectations. The most policy makers. conservative approach to predicting future fertility rates is to rely on birth In their continuing effort to provide expectation data for short term projections for the social and physical well-being . While cyclical fluctuations in fertility of older persons, various governmental can be expected on a long term institutions have been severely hampered basis, the degree to which fertility rates , in part, because they have not will rise or fall due to economic causes had access to realistic projections of can best be predicted by the periodic the population. A timely example of collection and evaluation of data on this is that the United States’ Congress birth expectations. is currently grappling with our nation’s inability to pay for Social Security benefits to our elderly. This crisis Blake, Judith. “Can We Believe Recent Data on stems from many factors, the primary Birth Expectations in the United States?” Demo one being that the reduction in fertility graphy 11: 28-44, 1974. rates means that, given the needs Gibson, Campbell. “The Elusive Rise in the Ameri of our elderly population, there are can Birthrate.” Science 196: 500-503, 1977. too few Americans contributing too few funds to the Social Security O’Connell, Martin, and Moore, Maurice J. “New Evidence on the Value of Birth Expectations.” System for their support. There has Demography 14: 255-264, 1977. also been a reduction in American mortality rates in past years, which Sklar, June, and Berkov, Beth. “The American means that there are proportionately Birth Rate: Evidence of a Coming Rise.” Science 189: 693-700, 1975. more persons surviving into old age. United States Bureau of the Census. “Fertility of American Women: June 1975.” Chris Bachrach, Deborah Dawson, and Jeanne Clare Ridley (left to right) 10

Estimates have consistently under- In March 1978, the actual inter- estimated future trends because they “ Grandmother” viewing will begin of 1000 white, non-institutionalized have been based on underlying Study Final women between the assumptions of fertility and mortality ages of 67 and 77 years using a trends that have not been fulfilled in Interviews to Begin randomized sample. It is expected reality. that it will take the 75 interviewers How is it that the grandmothers of three months to complete the process. Dr. Soldo is engaged in a full scale today maintained small family sizes in Analysis of the data by Dr. Ridley and study encompassing all aspects of data their childbearing years without benefit her Research Associates Ms. Deborah preparation, processing, analysis, of most of the contraceptive techniques A. Dawson and Ms. Christine A. policy evaluation and dissemination of that have only recently come Bachrach will then commence. findings. Data for the analysis will be into use? Fertility studies in the U.S. drawn from such sources as the U.S. have always excluded women past Bureau of the Census, the National their childbearing years, thus women Center for Health Statistics, the Social born in or before 1910 have never Security Administration and the been studied. These women, now in Bureau of Labor Statistics. Dr. Soldo their late 60’s and 70’s, produced the will be exploring the implications of smallest families to date in the history anticipated changes for public policy of the United States. Dr. Jeanne Clare in the scope, location and demand for Ridley of the Kennedy Institute’s provision of services to the elderly. Center for Population Research hopes, Not content to “let the data speak for by studying this population, to itself,” Dr. Soldo will endeavor to identify the extent to which certain effectively communicate with all social and economic changes affect levels of the Administration on Aging fertility rates. with regard to the interpretation and program utility of the research Work on this study began in 1973. A findings. series of small scale pretests culminated in a large scale pretest, con- ducted in July 1976, in which 211 women were interviewed on subjects including marriage and fertility histories , contraceptive techniques, abortion, work experience, and the effects of the depression. On the basis of this large scale pretest, the questionnaires will be revised for the final pretest, which will take place in December. 11

Fr. Richard McCormick Washington Area H.E.W. Ethics Seminar on Science, Advisory Board Technology and Ethics

Fr. Richard McCormick, S.T.D., S.J., The Washington Area Seminar on Rose F. Kennedy Professor of Science, Technology, and Ethics held Christian Ethics at Georgetown, has its first session on October 5 at just been appointed by Secretary Georgetown University. Thirty-five Joseph Califano to the new 12 member participants were present at the first Ethics Advisory Board of the of these lecture-discussion meetings Department of Health, Education and which are being hosted by the WeIfare. Awareness of the need for a Kennedy Institute. new Ethics Advisory Board for H.E.W. has grown out of the valuable contri Originally suggested by Dr. William butions made by the National Commission Blanpied of the National Science for the Protection of Human Foundation, the seminar was initiated Subjects of Biomedical and Behavioral to provide an informal setting where Research. people in the Washington area interested in the ethical aspects of science, Board members have been selected technology, and biomedicine could so that several disciplines including Fr. Richard McCormick, S.J. meet and discuss the issues. The law, philosophy, and medicine will be sessions are scheduled once a month represented. The Ethics Advisory throughout the academic year; each Board is chaired by James Gaither, considerations are unavoidable in meeting will provide an opportunity J.D., of San Francisco, and includes matters ranging from the sponsorship for seminar participants to explore a among others, Sisella Bok, Ph.D., of laboratory research on recombinant different aspect of science, technology, Lecturer on Medical Ethics of the DNA to the initiation of a massive and ethics. Harvard Medical School, Donald A. immunization program.” Henderson, M.D., Dean of Johns At the October 5 session the topic of Hopkins School of Health and The Ethics Advisory Board will hold Recombinant DNA Research was Hygiene, and Daniel Charles Tosteson, its first formal meeting in mid-November discussed from several perspectives. M.D., Dean of the Harvard Medical of this year. As the Board begins First, Dr. Mary Williams, a philosopher School. its work the members will direct their from the University of Delaware, attention to a number of topics addressed the issue from a philosophical Secretary Califano has commented including the ethical aspects of clinical point of view. After her presentation that decisions in the public health area experiments with new treatments; , Dr. Herman Lewis of the among the most difficult which he product safety and intervention; National Science Foundation and Dr. faces. “The difficulties lie not only in national immunization policy issues; Burke Zimmerman, Research the technical nature of those decisions, human reproduction research; privacy Associate to the House Subcommittee but also in the complex ethical issues issues in research, as well as other that are frequently involved. Ethical subjects upon which DHEW will need advice. Joan Sieber, Ph.D.

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on Health and the Environment, summarized Dr. Joan E. Sieber procedures of obtaining informed recent legislative developments consent, problems of confidentiality in the U.S. Senate and the House and how to resolve them, ethical of Representatives, respectively. Applied Ethics for problems of doing research on special Social Science Research populations such as children, the Washington, D.C. is one of only a few retarded, the institutionalized and the major cities with a large concentration aged, and ethical problems of studying of people interested in the ethical Joan E. Sieber, Ph.D., is spending the or evaluating institutions or social aspects of science and technology. 1977-78 academic year at the Institute programs. The Kennedy Institute, recognizing as a Visiting Scholar with the the desire of persons with similar concerns Center for Bioethics, and is on leave to meet and share ideas, offered from California State University, A key problem addressed by The to coordinate the Washington Area Hayward, where she is Professor of Ethics of Behavioral Research is the Seminar. The response has been quite Psychology. Dr. Sieber has specialized need for multilateral research positive, with the first meeting being in the study of decision making pro- planning and clear communication. attended by members of most of the cesses and the effects of anxiety on According to Dr. Sieber: “Many social area’s science- and health-oriented decision and learning processes. Her scientists believe that the valid way to organizations, including the National recent publications in these areas conduct research is to relate to Institutes of Health, the National include a book entitled Anxiety, subjects in a unilateral way. However, Science Foundation, the Institute Learning and Instruction, and an researchers who have become deeply of Medicine, the American Association article entitled “The Effects of sensitive to the rights of subjects and for the Advancement of Science, Learning When to be Uncertain on to subjects’ perspectives are learning the Office of Science and Technology Students’ Knowledge and Use of that there are unexpected scientific Assessment, the Environmental Drugs.” (as well as ethical) benefits of respecting Protection Agency, and the Food and subjects’ rights to self determination Drug Administration. Representatives Dr. Sieber’s work in applied ethics . For example, subjects from area universities, Congressional stems from her long-term research respond more honestly when they see staff members, and a senior interest in ethical decision making, that the researcher has taken every analyst from the Library of Congress and from her recognition of the need possible step to maintain confidentiality were also present. The diverse backgrounds for a body of literature to help social and have disclosed to them the of the seminar participants, scientists in selecting the most ethical ways in which confidentiality cannot combined with stimulating speakers approaches and methods of answering be guaranteed. Subjects who are and the very nature of the subject research questions. In 1976, she began respectfully and adequately informed matter itself, seem to assure interesting writing a book that is designed to of the nature and purposes of the and thought-provoking interaction show the professional researcher and research sometime provide important in the months ahead. student in the behavioral sciences how insights that enable the researcher to use ethical theory with current re- to correctly interpret results. Community Cynthia Prather search methodology to understand the leaders who are properly risks inherent in their research and to consulted throughout a project are select the most valid and ethical way generally happy to give vital assistance to conduct that research. This book, to the researcher when problems arise The Ethics of Behavioral Research, which only they have the power to which is now being completed, deals resolve. One aim of the book is to with topics such as the meaning and raise researchers’ consciousness about 13

the moral and practical value of outcomes of these activities would be Bioethicists Conduct ethical research practices.” the development and dissemination of Chautauqua-Type Short curricula (in the form of workshops, Because Dr. Sieber is mindful of the course materials, and textbook Courses for College need in the social sciences for a comprehensive materials) on ethical decision making Teachers literature on conceptual in each of these research areas, as well and methodological approaches to as the development of a comprehensive solving ethical dilemmas in research, handbook. Two Kennedy Institute scholars, Dr. she has also undertaken to edit a book Deborah Drayer Tom L. Beauchamp and Dr. LeRoy entitled Ethical Decision Making in Walters are participating in a cooperative Social Science Research. This book is enterprise sponsored jointly by the preliminary stages of development the American Association for the Advancement and will be completed next fall. of Science and the National It contains the contributions of 33 Science Foundation. Modelled after distinguished social scientists, and the Chautauqua courses of the early deals with a wide range of conceptual years of this century, the program consists and methodological problems ranging of short courses in several disciplines from deciding what to do when one’s taught by scholars who are working research data are subpoenaed, to at the frontiers of their specialities selecting methods of research that . These scholars travel a “circuit”, make it unnecessary to deceive meeting with a select group of college subjects. teachers for two days at each of three centers, once in the fall and again in In collaboration with some of the the spring. In the interim, participants contributors to Ethical Decision work on projects related to the theme Making in Social Science Research, of the course. The purpose of the Dr. Sieber is organizing a series of short courses is to communicate recent workshops for researchers on ethical advances directly to college decision making in research planning. teachers so that their teaching is relevant The first such workshop will be given and up to date. in Washington, D.C. next March at the 49th Annual Meeting of the Eastern Dr. Tom Beauchamp Psychological Association. As a next Course Director Tom Beauchamp, step in this educational endeavor, Dr. Ph.D., is a member of the Kennedy Sieber is developing a proposal to Institute’s Center for Bioethics, and sponsor a series of meetings that Associate Professor in Georgetown would draw together concerned social University’s Department of Philosophy scientists from all areas of research. At , as well as as the staff philosopher meetings, the major ethical for the National Commission for the problems in each area of research Protection of Human Subjects of Bio- would be specified and persons competent medical and Behavioral Research. to work on these problems would be identified. The expected Participants of conference on National Survey of Family Growth held at Kennedy Institute.

Dr. Beauchamp teaches the course, consisting of lectures and extensive discussion Adolescents to be “Ethical Issues in Death and Dying”. sessions incorporating case The course focuses primarily on three studies and role playing. Several public-policy Included in National topics: euthanasia, suicide, and the aspects of recombinant Survey of Family Growth rights of the dying patient. The course DNA research are analyzed, including: will also include discussion of recent Murray Gendell, Ph.D., of the Kennedy attempts to update the definition of 1. Should there be government regulation Institute’s Center for Population death in medical, legal, and ethical lit of basic science research, and Research, has been investigating some erature. The format of the course includes particularly of recombinant DNA re- of the important ethical and methodological lectures and discussions on search? issues in including never-married both ethical theory and case studies. 2. What should be the role of the women (aged 15-44) for the first The course is designed for college public, of the scientific community, time, in major periodic surveys of teachers of health-related sciences as and the National Institutes of Health child-bearing and family planning. well as biology, psychology, philosophy in the design and enforcement of regulations Plans are being made by the U.S. Government of science, and others interested ? to include these women in in the interface between philosophy Course participants from the natural the now existing National Survey of and science. Course participants sciences, social sciences and humanities Family Growth. Of particular concern will work on interim projects will work in interim projects that is whether to include teenagers 15-17 that will involve resolution of a series will include the completion of as- years of age. of difficult cases. signed readings and the collection of information on recombinant DNA re- One of the critical ethical and legal issues Dr. LeRoy Walters search from local news sources, as well surrounding inclusion of adolescents as 1) designing a course or module on (who are legal minors) in this LeRoy Walters, Ph.D., is Director of recombinant DNA research for under- national survey, is that of procuring the Kennedy Institute’s Center for Bioethics graduate students; 2) drafting a bill parental consent. In order for parental and the Editor of the annual providing for public oversight of recombinant consent to be obtained, the government Bibliography of Bioethics, as well as . DNA research at the state must inform both the parents being a member of the National Institutes or federal level; or 3) writing a short and their daughters about the purpose of Health Advisory Committee paper on a basic scientific or social issue and nature of the survey and assure on Recombinant DNA Molecule Re- in recombinant DNA research. them that the information gathered search. will be kept anonymous and confidential Both Dr. Beauchamp’s and Dr. Wal . Great care must also be taken Dr. Walters teaches a course entitled, ter’s courses will enable college teachers that the survey questions do not cause “Recombinant DNA: Social and Scientific to go back to their own students any harm or embarrassment to the Perspectives”, in conjunction better equipped to stimulate informed adolescents. with Dr. Elizabeth Kutter, who is a discussion on some of the challenging member of the Faculty in Biophysics ethical issues of our day. Dr. Gendell’s study is under contract at Evergreen State College and has with the Health Resources Administration done research on the biochemical genetics of the U.S. Dept, of Health, of bacterial viruses. Education and Welfare. Begun in January , the one-year project is drawing The format of the course is similar to that of Dr. Beauchamp’s course, con- 15

to a close, To date, two major components regarding substantive, methodological Sally Chase of the project have been completed and ethical concerns. : reviewing the literature to Information learn of similar research in which The final report of the project will be young never-married women have participated completed by Dr. Gendell this December Retrieval Project , as well as reviewing the findings . The recommendations will assist concerning premarital pregnancy in the organizing and conducting The Kennedy Institute’s Information and out-of-wedlock births; and inter- of the next National Survey of Family Retrieval Project, now in its fourth viewing scholars and researchers in a Growth. With the development of a year, produces the Bibliography of variety of behavioral and medical disciplines national survey program that includes Bioethics. The first volume, printed who have done research on adolescents, a major step will have in 1975, contained 800 entries. and related problems. been taken in understanding the Volume Four, scheduled to appear trends in adolescent sexual activity, in 1978, will contain 2000 entries, A conference was held on 28 October contraceptive use and fertility, in addition including information on court 1977 at the Kennedy Institute, attended to more fully understanding decisions, bills, audiovisual materials by scholars and government officials U.S. trends in the reproductive behavior and unpublished documents, as well responsible for conducting the of all women. as monographs, journals and newspaper survey. In addition to Dr. Gendell and articles. his associate, Dr. N.K. Nair of the Kennedy Institute, some prominent In order to handle the increasing investigators of fertility, family planning number of entries the Retrieval and health-related matters participated Project has added Sally Chase to their in this conference. They staff, as a Bibliographer. Sally Chase is were Arthur A. Campbell, Center for well known to members of the Institute Population Research, National Institute since she comes to the Retrieval of Child Health and Human Development Project from the Encyclopedia of ; Frederick S. Jaffe, The Bioethics (available in Spring, 1978), Alan Guttmacher Institute; and Chris where she served as the Assistant Man- topher Tietze, The Population Council aging Editor. . William F. Pratt of the Family Growth Survey Branch also attended In addition to her work on the Encyclopedia the meeting, as did John Patterson of , Sally has written two books the Vital Statistics Department of the for a childrens’ school library series, National Center for Health Statistics, compiled three books of modern DHEW. poetry, and was an editor for the Book of Knowledge. The two main objectives of this meeting were: 1) to review the plans pro- The Bibliography of Bioethics is part posed by Dr. Pratt’s office for a pilot Sally Chase of the Bioethics Information Retrieval study in 1978, a pre-test in 1979, and System which now has a computerized the third cycle of the survey itself, in retrieval system for accessing 1980; and, 2) to review the summary bioethical information. The system of experts’ views and suggestions re- contains over 3500 entries and will be updated tri-annually. Both the Patricia King, J.D.

16

Bibliography and the computerized law review article which she hopes to retrieval facility are invaluable tools Bioethics and complete by the end of the semester. for researchers who are investigating areas of the life sciences where legal Legal Issues Professor King graduated from questions, ethical issues, and value Wheaton College in 1963 with depart- conflicts must be considered. mental honors in religion and philosophy Patricia King, J.D. . She received her J.D. degree The computer facility is located in the from Harvard Law School in 1969, Kennedy Institute and interested Patricia King, J.D., Associate and was admitted to practice at the persons are presently invited to use it Professor at Georgetown Law School, D.C. bar later that same year. Her free of charge. Bibliographers Maureen is presently exploring various legal involvement in bioethics, however, did Canick and Renee Johnson (202 625- aspects of bioethics during her semester not begin until 1974 when she was 2371) are available to assist in the as a Visiting Research Scholar here pointed to the National Commission computer searches. The system will at the Center for Bioethics. for the Protection of Human Subjects become a part of the National Library in Biomedical and Behavioral of Medicine Information Retrieval One of the areas she is researching is Research. It was because of this work System, at which time there will then the legal status of the unborn, particularly that she became interested in other be a charge for these retrieval services. in relation to how legal areas of bioethics, and grew in­ problems involving the fetus, the creasingly active in various groups Volume Three of the Bibliography of mother, and third parties should be doing research in the field. It was Bioethics is now in print. Copies may resolved. also through this Commission that be ordered directly from Gale Re- Professor King began working with Dr. search Co., or further information on “Most lawyers have concentrated on Walters and scholars of the Kennedy all three volumes can be acquired Roe v. Wade (1973 Supreme Court Institute. Last summer she was selected from the Information Retrieval Project decision that state governments could as a discussion leader for the at the Kennedy Institute. not legislate on abortions during the Institute’s Total Immersion Group, first three months of a woman’s pregnancy and was invited to be a Visiting Re- ) in terms of whether the search Scholar for the 1977 fall Supreme Court was the appropriate semester. body to make the decision. There has been little legal commentary on the substance of the decision itself, or In addition to her legal background, how anybody—whether it be a state Professor King brings added insight to legislature or Congress—should approach the field of bioethics. A black woman, problems of the unborn in a she is tackling issues which few blacks variety of public policy situations,” or women have addressed. In relation Professor King commented in a recent to this, Professor King sees a definite interview. Since she feels that not need for more minorities to become enough emphasis has been given to involved in the field of bioethics, this particular aspect of the issue, especially during the early discussion Professor King is presently working phases of various bioethical issues. on an approach to dealing with the Citing previous unethical experiments unborn in various areas of the law. She on Blacks and Hispanic-Americans, is presently compiling her ideas for a fears by minorities that they might be Robert Plotkin,J.D. 17 singled out as subjects of psycho- the course attracts students from various of the committee of the University surgery as a means of social control, disciplines and is presently composed Affiliated Hospital Program which is laws concerning genetic screening of of students of law as well as preparing a curriculum to further train blacks for sickle-cell anemia, as well as philosophy. health care professionals who work other aspects of bioethics which with the mentally handicapped. Mr. would affect the society as a whole, Ms. King plans to continue teaching Plotkin is gathering materials dealing Professor King reemphasized that full time at Georgetown’s Law School with mental retardation and legal minorities should become more active after she completes her semester at issues which will be incorporated into in the debate on how these issues are the Institute. Hopefully, Ms. King’s this curriculum. going to be resolved. work here has also inspired her to continue her efforts in bioethics. In addition to the curriculum development Professor King herself is very involved Cynthia Prather program at the Medical a number of bioethics-related Center, Mr. Plotkin is preparing a organizations. In addition to the separate curriculum for a law school National Commission for the Protection seminar in “Law and Mental Retarda- of Human Subjects, she is a tion” to be offered by the Georgetown member of the Joint Commission on Robert Plotkin, J.D. University Law Center. Prescription Drug Abuse, the Washington Area Seminar on Science, Techno- Robert Plotkin, J.D., has joined the Mr. Plotkin will be conducting a logy, and Ethics, and a Policy and Kennedy Institute this academic year seminar for Kennedy Institute faculty Data Safety Monitoring Board with 1977-78 as a Visiting Research Scholar and others this fall on the legal rights the National Institute of Health’s . His principal focus will be upon of the mentally retarded, and he will National Heart, Lung and Blood Institute ethical problems concerning the mentally teach in the 1978 Intensive Bioethics . She is also a Fellow with the retarded. Course next spring. Mr. Plotkin is Institute of Society, Ethics and the available to the Kennedy Institute Life Sciences. Mr. Plotkin received his law degree staff to discuss ethical problems raised from the University of Cincinnati by retardation and legal issues Professor King’s ever-expanding knowledge College of Law and was a Ford Foundation common to other areas of bioethics, of the field of bioethics is re Senior Fellow at the New York such as the issue of informed consent. flected in her teaching at Georgetown University School of Law. He is now a Law School. The subject matter of her staff attorney at the Mental Health His presence at the Kennedy Institute seminar, “Decisions in Human Experimentation Law Project in Washington, D.C., a will greatly assist in the development and Treatment,” once limited law firm which has done pioneer work of specific curriculum programs in the to experimentation on human on the concept of legal rights for the medical-legal-ethics area as well as subjects, has now been extended to mentally different. He has been legal sensitizing staff members to mental cover a variety of legal-biomedical counsel in cases establishing the right retardation issues. problems, including status of the to education and habilitation for retarded :us, abortion, death and dying, allocation individuals as well as cases protecting of scarce resources, and various the rights of retarded individuals aspects of genetic policy. Because accused of crimes. this seminar covers legal, ethical and medical problems in law and medicine, There are several major projects that Mr. Plotkin will be working on this year at the Institute. He is a member Mr. Sargent Shriver, Dr. Warren Reich, Dr. Paul Comely, and Dr. Bertram Brown (left to right).

Kennedy Institute International Advisory Board 4th Biennial Meeting, 30 September 1977

Mr. Norman St. John-Stevas, Mrs. Eunice Shriver (in Fr. Bruno Schiiller and Prof. Patricia King. background), and Mrs. Patricia Lawford.

Board Members (seated at table from left to right): Dr. Paul Ramsey, Dr. Robert Cooke, Dr. Andre Hellegers, Chairman of the Board Mr. Sargent Shriver, Sen. Edward Kennedy, and Gen. DeWitt Smith. 19

Betsy Walkup Sciences Library where for three years The Kennedy Institute Scholars she was head of the reference section New Librarian of the Reader’s Services program. ANDRE E. HELLEGERS, M.D. During this time, in addition to over- Director of the Institute Joins Center seeing the reference functions of the LE ROY WALTERS, PH.D. for Bioethics library, she served as an instructor of Director of the Center for Bioethics reference resources, Index Medicus TOM L. BEAUCHAMP, PH.D. ROY BRANSON, PH.D. and MEDLINE in curriculum courses VINCENT BURNS, S.J., S.T.D. designed for graduate students. Mrs. WILLIAM CARR, S.T.D. Walkup also taught workshops and JAMES F. CHILDRESS, PH.D. seminars for hospital librarians. H. TRISTRAM ENGELHARDT, JR., M.D., PH.D. RUTH FADEN, M.P.H., PH.D Prior to her employment as a reference JOHN C. FLETCHER, TH. M. librarian at the University of JOHN C. HARVEY, M.D., TH.M. PATRICIA A. KING, J.D Tennessee, Mrs. Walkup had three SID Z. LEIMAN, PH.D. years experience with the Memphis RICHARD A. McCORMICK, S.J., S.T.D. Regional Medical Program and two SEYMOUR PERLIN, M.D years in public librarianship. She ROBERT PLOTKIN, J.D . earned her Master’s Degree at Emory WARREN T. REICH, S.T.D. BRUNO SCHULLER, S.J., S.T.D. University in Atlanta. JOAN SIEBER, PH.D. CONRAD TAEUBER, PH.D. The Bioethics Library was established Director of the Center for Population in 1973 and since that time has grown Research Betsy Walkup to a collection of more than 4,000 CHRISTINE BACHRACH, M.A. books and 10,000 articles. Its hours LEON F. BOUVIER, PH.D. are 9-5, Monday through Friday, DEBORAH DAWSON, M.A. The Kennedy Institute is pleased to MURRAY GENDELL, PH.D. announce that Mrs. Betsy Walkup has and it is open for use by the public. HAITUNG KING, PH.D. been appointed Associate Librarian in THOMAS W. MERRICK, PH.D. JEFFREY S. PASSEL, PH.D. charge of reader’s services in the Bio- JEANNE C. RIDLEY, PH.D. ethics Library. Her duties include reference HENRY S. SHRYOCK, PH.D. assistance for the library’s JACOB SIEGEL, M.A. on-site users as well as those persons BETH J. SOLDO, PH.D. who request information by letter and PAUL BRUNS, M.D. telephone. She also edits the library’s Director of the Laboratories for monthly publication, “New Titles in Reproductive Biology Bioethics”, and maintains a bibliogra ROBERT C. BAUMILLER, S.J., PH.D. hy of publications by the Kennedy ROBERT CEFALO, M.D., PH.D. Institute scholars. RONALD CHEZ, M.D. DESSOUKY A. DESSOUKY, M.D. PETER RAMWELL, PH.D. Mrs. Walkup has come to the Kennedy JOHN J. SCHRUEFER, M.D. Institute from the University of JOAN SIMKOVICH, M.D.. PH.D. Tennessee Center for the Health The Kennedy Institute Quarterly Report is published by the Kennedy Institute, Georgetown University, Washington, D.C. 20057

Carol Hetler, Editor Contributing Editors: Deborah M. Drayer Cynthia J. Prather

Third class postage paid at Washington, D.C.

Andre E. Hellegers, M.D, 20

were Jewish. Perhaps even that is too catholic scholarship. If anything A Note From much of an assumption, but it seemed emerged from the 2nd Vatican Council to me not unreasonable and errors in it is surely that you will make little the Director assessment mattered little since our sense of the Catholic unless you understand scholars are picked on the basis of the catholic. Some day that September 30, 1977 saw the 4th biennial their scholarship rather than their religion may be understood in all places which International Advisory Board . Assuming that scholarship and call themselves universities. Meeting of the Institute. It was preceded denominational affiliation are not mutually on September 29th by a lecture exclusive, statisticians will be given by board member Professor delighted to learn that about 30% of Jerome Lejeune at the Medical our past and present scholars were School, and by a Dean’s Seminar con- found to be Catholics, 15% Jewish, ducted in the School of Foreign Service 45% Protestant, while 10% had no religious by the Hon. Norman St. John- affiliation. Interestingly several Stevas, M.P., also a member of the volunteered that they attended the board. It was followed on October 1st church services in the denomination by the Honorary Degree Ceremony of their spouse’s, rather than their for Mrs. Rose F. Kennedy, an event own. attended by board members and re- ported elsewhere in this report. The meaning of the findings of this rapid survey is for sociologists to determine The board meeting was unusually interesting . As for myself—and the in that, for the first time, staff Board — we would be delighted to see members of the Institute were present endowed chairs in specifically Jewish and reported the progress in the various and Islamic Ethics, regardless of the activities of the Institute. Particularly denomination of the person who held interesting was a report by the the chair. We already have chairs designated New York firm of Ruder and Finn on specifically to research the a survey of the perceptions of major Catholic, the Protestant, and Philosophical corporations and foundations vis-a-vis ethical traditions. In the mean- the subject of bioethics. Perhaps not time the Ruder and Finn findings surprising was the finding that the seem to suggest that it is not under- Kennedy Institute was perceived totally stood in the corporation and foundation as “a Catholic Operation” (note worlds that the word Catholic the capital “C”). It led me for the first can be spelt with either a capital or time in the Institute’s history to list small “C”. The capital “C” is associated the religious affiliations of our present with Rome, the small “c” with and past scholars and to add up “the Athens. The meaning of the word score”. Some scholar’s denomination I Catholic (with a little “c”) is universal. had always suspected for instance, I tacitly assumed that the Jesuits were It is altogether encouraging to find Catholic and those wearing yamulkas that a Catholic university is, in retrospect , found to have been fostering Copyright © The Kennedy Institute Winter 1978