Subject(s)
Genetics, Medical , Ethics, Medical , Patient Rights , Genetic Services , Bioethics , ReviewSubject(s)
Genetics, Medical/trends , Prejudice , Ethics, Professional , Genetic Diseases, Inborn/genetics , HumansABSTRACT
Embryo and stem cell research in the USA is inextricably linked with the abortion debate. Since 1973, when elective abortions became legal, the government has refused to fund therapeutic research for fear it would encourage abortions. Research has continued in an unregulated private sector. Here, the unique US cultural, political and religious factors that have resulted in this situation are discussed.
Subject(s)
Embryology/history , Ethics, Medical/history , Research/history , Stem Cells/cytology , Abortion, Induced/history , Culture , Female , History, 20th Century , Humans , Politics , Pregnancy , Religion and Science , United StatesABSTRACT
The word "serious" appears in laws and policies regarding genetics services but is not defined. Genetics professionals would most likely be consulted if definitions are made. We surveyed all U.S. board-certified genetics services providers and all members of the European Society of Human Genetics (ESHG), Canadian College of Medical Geneticists (CCMG), and Ibero-American Society of Human Genetics (IASHG), using anonymous, mailed questionnaires. Respondents were asked to list three conditions they considered lethal, three that were serious but not lethal, and three that were not serious. Of 3,317 asked to respond, 1,481 (45%) returned questionnaires. Analysis was limited to responses of the 1,264 (85%) who saw patients. Respondents listed 537 conditions, with extensive overlap between categories; 46% of conditions listed as serious were also listed as not serious and 41% were listed as lethal. Respondents did not want professional societies, laws, or national ethics committees to define serious. They favored individual patients as decision makers, with the help of individual doctors. Their reasons were that genetic disorders vary in expression, individuals perceive disorders differently, professional or legal definitions could be unfair to minority groups, definitions tend to be inflexible when new treatments appear. In the United States, most would not use a definition of serious to limit reproductive services, carrier screening, or neonatal intensive care; outside the United States, more supported limitations. There is not sufficient consensus among experienced genetics professionals to define serious genetic conditions for purposes of law or policy. Responses point to social and economic influences on perceptions of what constitutes a serious genetic disorder.
Subject(s)
Genetic Diseases, Inborn/classification , Female , Genetic Counseling , Genetic Diseases, Inborn/physiopathology , Genetics, Medical , Humans , Male , SemanticsABSTRACT
We surveyed genetics professionals, patients, and the public about rights to information, to requested services, and to parenthood, posing difficult cases found in practice. In all, 2906 genetics professionals (63%), 499 primary care physicians (59%), 476 North American genetics patients (67%), 394 French patients (51%), 593 German patients (65%), and 988 members of the American public (99%) returned anonymous questionnaires. Results suggest a trend toward increased respect for patient autonomy since an earlier survey in 1985; in most nations more would perform prenatal diagnosis for a couple with 4 daughters who desire a son. A minority (35% in U.S., 14% elsewhere) would perform PND for a deaf couple who want a deaf child, but most (94% in U.S., 62% elsewhere) would do prenatal paternity testing in the absence of rape or incest. About half (51%) would support a woman with fragile X who wants children. The trend to respect patient autonomy was greatest in the U.S. and was least evident in China and India. In general, responses to these cases illustrate a shift away from population or eugenic concerns to a model of genetics focused on the individual.
Subject(s)
Abortion, Eugenic , Attitude of Health Personnel , Attitude , Genetic Counseling , Genetic Services , Internationality , Patients/psychology , Personal Autonomy , Prenatal Diagnosis , Sex Determination Analysis , Abortion, Eugenic/psychology , Access to Information , Asia , Data Collection , Deafness , Disabled Persons , Europe , Female , Genetic Counseling/psychology , Genetic Counseling/statistics & numerical data , Genetic Diseases, Inborn , Genetic Testing , Humans , Latin America , Male , North America , Paternalism , Paternity , Patient Rights , Public Opinion , Referral and Consultation , Refusal to Treat , Stress, Psychological , Surveys and Questionnaires , WorkforceSubject(s)
Attitude , Black or African American , Genetic Counseling , Genetic Testing , Health Personnel , Minority Groups , Patients , Public Opinion , Abortion, Eugenic , Adoption , Confidentiality , Counseling , Data Collection , Disclosure , Freedom , Genetic Diseases, Inborn , Genetic Privacy , Genetic Research , Genetic Services , Genetics , Humans , Medicine , Paternalism , Pedigree , Personal Autonomy , Physicians , Prenatal Diagnosis , Reproductive Techniques, Assisted , Sex Determination Analysis , Social Values , Specialization , United StatesSubject(s)
Attitude , Counseling , Genetic Counseling , Health Knowledge, Attitudes, Practice , Health Personnel , Abortion, Eugenic , Abortion, Therapeutic , Confidentiality , Congenital, Hereditary, and Neonatal Diseases and Abnormalities , Data Collection , Disabled Persons , Eugenics , Genetic Diseases, Inborn , Genetic Predisposition to Disease , Genetic Privacy , Genetic Testing , Germany , Humans , National Socialism , Pedigree , Political Systems , Prenatal Diagnosis , Rape , Reproduction , Sex Determination Analysis , Socioeconomic FactorsSubject(s)
Humans , Confidentiality/ethics , Informed Consent/ethics , Education, Professional/ethics , Education, Primary and Secondary , Genetics, Medical/ethics , Genetic Services/ethics , Principle-Based Ethics , Adoption , Databases, Nucleic Acid/ethics , Preimplantation Diagnosis/ethics , Prenatal Diagnosis/ethics , Education , Embryonic Structures , Eugenics , Genetic Predisposition to Disease/genetics , Switzerland , Genetic Therapy/ethicsSubject(s)
Genetic Research , Genetic Therapy , Genetics , Germ Cells , Guidelines as Topic , International Cooperation , Internationality , Social Control, Formal , Biomedical Research , Biomedical Technology , Consensus , Decision Making , Embryo Research , Government Regulation , Humans , Preimplantation Diagnosis , Reproductive Techniques, Assisted , ResearchSubject(s)
Attitude , Counseling , Genetic Counseling , Health Personnel , Men , Moral Development , Morals , Women , Chromosome Aberrations , Chromosome Disorders , Confidentiality , Data Collection , Decision Making , Disclosure , Empathy , Family , Female , Freedom , Genetic Diseases, Inborn , Health Knowledge, Attitudes, Practice , Humans , International Cooperation , Internationality , Neural Tube Defects , Paternalism , Patients , Personal Autonomy , Pregnancy , Pregnant Women , Prenatal Diagnosis , Professional-Patient Relations , Reproductive Techniques, Assisted , Sex Determination Analysis , Social Dominance , Social Justice , Stress, Psychological , Surrogate Mothers , United StatesSubject(s)
Adolescent , Child , Decision Making , Genetic Diseases, Inborn , Genetic Testing , Risk Assessment , Risk , Adoption , Age Factors , Age of Onset , Confidentiality , Disclosure , Family , Family Relations , Freedom , Genetic Counseling , Guidelines as Topic , Heterozygote , Humans , Informed Consent , Jurisprudence , Mental Competency , Minors , Parental Consent , Personal Autonomy , Physicians , Reproduction , Stress, Psychological , Third-Party ConsentABSTRACT
Women constitute 35% of providers in genetics, at the doctoral level. A survey of 682 geneticists in 19 nations showed that gender was the single most important determinant of ethical decision making. Women were less directive and more observant of patient autonomy than men. The future influx of women into medicine calls for research on provider gender and decisions. Research is also needed on women's and men's perceptions of abortion for genetic reasons, on extended families' views, on agreement between partners and on overall effectiveness of genetic counseling, including communication, elements of provider satisfaction, interpretation of risk and uncertainty after counseling.
Subject(s)
Attitude , Ethics, Medical , Genetic Counseling , Genetics , Health Personnel , International Cooperation , Internationality , Men , Moral Development , Morals , Prenatal Diagnosis , Sex , Women , Abortion, Eugenic , Abortion, Induced , Behavioral Research , Data Collection , Decision Making , Disclosure , Empathy , Empirical Research , Evaluation Studies as Topic , Family , Female , Feminism , Fetal Diseases/diagnosis , Freedom , Genetic Diseases, Inborn/diagnosis , Genetic Testing , Humans , Male , Patients , Personal Autonomy , Reproductive Techniques, Assisted , Research , Sex Determination Analysis , Social JusticeSubject(s)
Attitude , Genetic Counseling , Genetic Testing , International Cooperation , Internationality , Prenatal Diagnosis , Abortion, Induced , Child , Confidentiality , Consensus , Counseling , Data Collection , Decision Making , Developing Countries , Disclosure , Disorders of Sex Development , Employment , Family , Female , Freedom , Genetic Diseases, Inborn , Genetic Privacy , Genetic Services , Health Personnel , Humans , Informed Consent , Jurisprudence , Parent-Child Relations , Pedigree , Personal Autonomy , Privacy , Reproductive Techniques, Assisted , Sex Determination Analysis , Social Values , Stress, Psychological , United States , Western World , Women's RightsSubject(s)
Abortion, Eugenic , Decision Making , Disabled Persons , Feminism , Pregnancy , Pregnant Women , Prejudice , Prenatal Diagnosis , Risk Assessment , Risk , Social Change , Women's Rights , Attitude , Child , Coercion , Congenital, Hereditary, and Neonatal Diseases and Abnormalities , Economics , Ethics , Eugenics , Europe , Female , Fetus , Financial Support , Genetic Counseling , Genetic Diseases, Inborn , Health Care Rationing , Home Care Services , Humans , Individuality , International Cooperation , Internationality , Jurisprudence , Maternal-Fetal Relations , Mothers , Patient Advocacy , Personhood , Physicians , Quality of Life , Resource Allocation , Socioeconomic Factors , Statistics as Topic , Stereotyping , United States , Value of Life , Wedge ArgumentABSTRACT
The progress of genetic knowledge magnifies existing ethical problems in medical genetics. Among the most troubling types of problems -- for medicine, patients, and the larger society -- are those of privacy and disclosure. Examples of the range of problems involving privacy and disclosure are: 1) disclosure of false paternity to an unsuspecting husband; 2) disclosure of a patient's genetic make-up to his or her unknowing spouse; 3) disclosure of information, against a patient's wishes, to relatives at genetic risk; 4) disclosure of ambiguous test results; 5) disclosure of adventitious nonmedical information, e.g., fetal sex; and 6) disclosure to institutional third parties, such as employers and insurers....