Telling relatives at genetic risk, against a client's wishes: client and provider views.
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Biomedical subjects
Publications and source records attributed to D C Wertz.
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The ethical views of 2,903 geneticists in 37 nations were surveyed and compared by gender. Women made up about half the physicians and PhDs and the great majority of genetic counselors. US women physicians differed from men physicians on 13% of 491 ethical questions; genetic counselors differed from all MDs on 60% and from women MDs on 46%. Women physicians were similar to men in directiveness and most counseling after prenatal diagnosis. More women would refer for sex selection, more would warn a patient's relatives of genetic risks against the patient's wishes, and fewer would test children for genes for adult-onset disorders. Genetic counselors were less directive than physicians, more likely to preserve confidentiality, and less willing themselves to abort. Outside the United States, women physicians differed from men 43% of the time; they were more directive than men, more pessimistic about disabilities, more willing to abort fetuses with genetic disorders, and more likely to place the health of potential children or the welfare of family above parental autonomy. No universal "women's ethic" emerged from the study; culture and professional locus affected views more than gender.
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In the future there is likely to be a large array of DNA-based tests to diagnose single-gene disorders and to identify predispositions to genetically influenced disorders. This article focuses on ethical, legal, and psychological implications of testing healthy children and adolescents for such disorders. Testing may offer medical or psychological benefits but may harm parent-child bonds or the child's self-concept. Clinicians may encounter situations where they must weigh the child's or adolescent's wishes against wishes of parents. We examine the legal history and current status of minors as health care consumers; psychosocial research on their maturity to make choices; impact of testing on intrafamilial relationships; views of national commissions on appropriate ages of assent and full informed consent; ethical and legal requirements for competence in children and adolescents; and disclosure of genetic information. We propose guidelines for predictive genetic testing and counseling of children and discuss risks and benefits of testing.
As part of a study of ethics and human genetics in 19 nations, we surveyed attitudes of 71 medical geneticists in 4 developing nations (Brazil, Greece, India and Turkey), and 611 geneticists in 15 developed nations, using anonymous questionnaires. Overall, 52% in India, 30% in Brazil, 29% in Greece, and 20% in Turkey would perform prenatal diagnosis to select a male fetus for a couple with 4 daughters and no sons. Sex selection is the major use of prenatal diagnosis in India. The majority in the U.S.A. (62%) and Hungary (60%) would also do sex selection or refer. We discuss possible means of preventing sex selection while avoiding medical paternalism and promoting the autonomy of women.
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Fletcher, Berg and Tranøy (1985) proposed that medical geneticists around the world would benefit from collective reflection on their preferred approaches to the most frequent of the difficult moral choices in practical genetics. In 1985-86, Wertz & Fletcher undertook a survey of geneticists' views in 19 nations. Results were widely disseminated. In this paper, the authors describe a new survey that they are conducting in 37 nations.
The so-called 'new genetics,' a phrase sometimes associated with The Human Genome Initiative, poses no really new ethical problems, but exacerbates old ones. The issues of most concern to geneticists and their patients are summarized under the eleven headings below. These issues emerged from a 19-nation study of ethics and genetics in 1985-86 and from preliminary work on a forthcoming 36-nation study by the same authors.
The objective of this study was to explore psychosocial factors underlying decisions about use of prenatal diagnosis for cystic fibrosis (CF), among parents of affected children. Anonymous survey questionnaires, supplemented by voluntary interviews, were used at 12 CF centers in six New England states, for a consecutive sample of families of minor children visiting CF centers during a 4-mo period. In all, 227 (71%) of 318 families responded. We hypothesized that attitudes toward utilization would be affected by (a) intentions to have children, (b) knowledge, (c) perception of risk, (d) the health of the child with CF, (e) expectations about the child's future, (f) attitudes toward abortion, (g) insurance, (h) genetic counseling, and (i) sociodemographic factors (including attendance at religious services). Of the 227 couples who responded, 69% were surgically sterile, over 45 years of age, widowed, or divorced, and 31% were at risk. Of 70 at-risk couples, 44% intended to have more children; of these, 77% had had or were considering CF prenatal diagnosis. Most families knew CF could be diagnosed prenatally; 20% would terminate for CF. Among intended prenatal diagnosis users, 44% would carry a fetus with CF to term, 28% would abort, and 28% were undecided. Stepwise logistic regression showed three variables significantly related to intentions to use prenatal diagnosis: (1) respondent's willingness to abort for CF (P less than .02, odds ratio 3.36), (2) respondent's siblings' approval of abortion for CF (P less than .03, odds ratio 2.99), and (3) respondent listed no accomplishments for the child with CF (P less than .09, odds ratio 3.01). The majority of affected families reject selective abortion for CF; many will curtail childbearing rather than use prenatal diagnosis.
BACKGROUND: DNA prenatal diagnosis for cystic fibrosis (CF) has been available for parents of affected children since late 1985. METHODS: Using anonymous questionnaires, we surveyed 395 parents of children with CF at 12 New England CF centers with regard to 12 maternal or family situations and 11 fetal characteristics; 271 (68%) responded. RESULTS: The majority supported legal abortion in the first trimester for all 23 situations; 58% would abort for severe mental retardation (MR), 40% would abort for a genetic disorder leading to death before age five years, 41% for a child bedridden for life, 35% for moderate MR, 20% for CF and 17% for a severe incurable disorder starting at age 40 years. Few would abort for a disorder starting at age 60 years, for genetic susceptibility to alcoholism or for sex selection. Variables most strongly related to abortion for CF were attitudes of spouse, respondent's siblings, and CF doctor toward abortion for CF as well as infrequent attendance at religious services. CONCLUSIONS: Prenatal diagnosis may not reduce substantially the number of CF births to parents of CF children because most do not accept abortion for CF.
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To provide a basis for international discussion of ethical problems, we studied responses of medical geneticists in 18 countries to questionnaires about 14 clinical cases and five screening situations. Of 1,053 asked to participate, 677 (64%) responded. There was greater than or equal to 75% consensus on five cases involving (1) disclosure of (1) conflicting diagnostic findings, (2) disclosure of ambiguous results, (3) disclosure of controversial interpretations, (4) protection of mother's confidentiality in cases of false paternity, and (5) nondirective counseling about 45,X and XYY syndrome. A majority (51%-60%) would disclose the diagnosis to relatives at risk for Huntington disease or hemophilia A, against the patient's wishes; would disclose which parent carries a translocation causing Down syndrome; and would disclose XY genotype in a female. As reproductive options for patients with disorders not diagnosable prenatally, 84% would discuss artificial insemination by a donor, 66% would discuss in vitro fertilization with donor egg, and 46% would discuss surrogate motherhood. In all, 85% would perform prenatal diagnosis for (or would refer) parents who refuse abortion, 75% for maternal anxiety, and 42% for selection of fetal sex. Screening questions showed that 72% believed that workplace screening should be voluntary and that results should be confidential.
In order to provide a basis for international discussion of ethics among geneticists, we surveyed the responses of medical geneticists to a questionnaire describing 14 hypothetical cases that posed ethical dilemmas. The cases were selected through discussions with leading geneticists in 12 nations, as representative of the most difficult problems of moral choice experienced in practice. Six cases involved indications for prenatal diagnosis or disclosure of information. All medical geneticists in each of 18 nations were included. Of 1053 asked to participate, 677 (64 per cent) responded. A large majority (83 per cent) would perform prenatal diagnosis for parents who oppose abortion but request the service. A smaller majority (63 per cent) would do so for maternal anxiety, and a minority (25 per cent) would perform for sex selection in the absence of X-linked disease. Most would disclose conflicting controversial, or ambiguous test results, and two-thirds would disclose colleagues' differences of opinion.