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PubMed2002

Bioethics after the terror.

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.

Bioethics↗
PubMed1998

Pilot study on patients' and spouses' attitudes toward potential genetic testing for bipolar disorder.

OBJECTIVE: The purpose of this pilot study was to gain information about attitudes of individuals with bipolar disorder and their spouses toward some of the ethical and social issues arising from rapidly advancing genetic research on bipolar disorder. METHOD: Patients with bipolar disorder and their unaffected spouses were asked to answer questionnaires assessing their knowledge and attitudes about treatment response rates for bipolar disorder, probability of inheritance, genetic testing, disclosure of genetic information, abortion, marriage, and child-bearing. RESULTS: The overwhelming majority of the patients and spouses said that they would take advantage of genetic tests for bipolar disorder if such tests were to become available. Most patients and spouses agreed that the benefits of knowing whether one carries a gene for bipolar disorder would outweigh the risks. The decisive majority of respondents also felt that they would not abort a fetus that carried a gene for bipolar disorder. Furthermore, most patients and spouses agreed that the knowledge that one of them carried a gene for bipolar disorder would not have deterred them from marriage or childbearing. CONCLUSIONS: The results of this study suggest that most individuals believe that they would benefit from the use of genetic testing for bipolar disorder if it were to become available. Follow-up studies using a broader patient sample and nonclinical control groups would be useful in further evaluating the issues addressed in this pilot study.

Abortion, Eugenic↗
PubMedDate not supplied

Genetic screening for susceptibility to depression: can we and should we?

OBJECTIVE: To summarize current knowledge about genetic susceptibility to mood disorders and examine ethical and policy issues that will need to be addressed if robustly replicated susceptibility alleles lead to proposals to screen and intervene with persons at increased genetic risk of developing mood disorders. METHOD: Empirical studies and reviews of the genetics of unipolar and bipolar depression were collected via MEDLINE and psycINFO database searches. RESULTS: A number of candidate genes for depression have been identified, each of which increases the risk of mood disorders two- or threefold. None of the associations between these alleles and mood disorders have been consistently reported to date. CONCLUSIONS: Screening the population for genetic susceptibility to mood disorders is unlikely to be a practically useful policy (given plausible assumptions). Until there are effective treatments for persons at increased risk, screening is arguably unethical. Screening within affected families to advise on risks of developing depression would entail screening children and adolescents, raising potentially serious ethical issues of consent and stigmatization. Genetic research on depression should continue under appropriate ethical guidelines that protect the interests of research participants.

Adolescent↗
PubMed2001

Ethical principles and pitfalls of genetic testing for dementia.

Progress in the genetics of dementing disorders and the availability of clinical tests for practicing physicians increase the need for a better understanding of multifaceted issues associated with genetic testing. The genetics of dementia is complex, and genetic testing is fraught with many ethical concerns. Genetic testing can be considered for patients with a family history suggestive of a single gene disorder as a cause of dementia. Testing of affected patients should be accompanied by competent genetic counseling that focuses on probabilistic implications for at-risk first-degree relatives. Predictive testing of at-risk asymptomatic patients should be modeled after presymptomatic testing for Huntington's disease. Testing using susceptibility genes has only a limited diagnostic value at present because potential improvement in diagnostic accuracy does not justify potentially negative consequences for first-degree relatives. Predictive testing of unaffected subjects using susceptibility genes is currently not recommended because individual risk cannot be quantified and there are no therapeutic interventions for dementia in presymptomatic patients.

Algorithms↗
PubMed1999

Genetic testing and employee protection.

Given advances in the science of genetics it is increasingly possible for individuals to acquire an increased understanding about their DNA. Employers may wish to access such information or may request that employees participate in genetic testing. An examination of the UK legislative framework to accommodate or to prevent such demands raises concern about the need to balance the employer's economic interests and the autonomy of the employee.

Persons with Disabilities↗
PubMed2000

Biomedicine, genetics and disability: reflections on nursing and a philosophy of holism.

This article critically explores the notion of those sociopolitical spaces that are 'disability', 'holism' and 'genetics', arguing from the perspectives of someone who identifies as having a disability. Medical genetics is seen to reflect the ideology and dominant biomedical reductionist thought. In contrast with this, it is proposed that disability and health are inherently social. A nursing approach is seen to recognize the social and holistic nature of the human person and to present a critical reflection on the reductionistic applications of medical genetics.

Attitude to Health↗
PubMed2000

A professional code of ethics provides guidance for genetic nursing practice.

While ethical quandaries and dilemmas are commonplace for nurses, recent advances in human genetics have and will continue to create new challenges and controversies. Throughout time, nursing has been an ethical endeavour, with nurses viewing the ethical mandates of their responsibilities on a par with other core dimensions of their professional life. The (American) profession's code of ethics, Code for nurses with interpretive statements, provides direction for practice and for the fulfillment of ethical obligations. The explication of these ethical norms and values that shape professional practice is necessary as nurses confront the integration of genetic services into health care. The goal of preserving professional integrity and ethical soundness in the context of genetic health care mandates that nurses rely on and act upon the profession's national and international codes of ethics.

American Nurses' Association↗
PubMed1999

Nondirectiveness in prenatal genetics: patients read between the lines.

For decades questionnaires have been used to measure the cognitive and psychological effects of prenatal genetic testing, but little is known about why some women undergo testing and others decline. Research indicates that many factors influence decision making, including values and beliefs. What is often denied rather than recognized is that the professional and personal values and beliefs held by the health care provider influence the patient's decision. It is assumed that, if genetic services are delivered in a nondirective manner, patients will not be affected by the provider's personal and professional standpoint. The qualitative research data reported here challenge this assumption. Getting to know patients' moral understanding and patterns of ethical reasoning by listening to their personal stories is recommended as a better way for nurses to help patients to make informed and autonomous decisions about prenatal genetic screening or diagnostic tests.

Adult↗
PubMed2006

Integrating molecular genetics analyses into clinical research.

The integration of molecular genetics approaches into the study of complex health phenomena is an increasingly important and available strategy for researchers across the health science disciplines. Pain sensation and response to painful stimuli are examples of complex health phenomena that are particularly amenable to molecular genetics approaches. Both human and animal model research suggests that differences in these responses may be related, in part, to variation in the genes that modulate sensation and behavior. The authors are currently managing a large cross-disciplinary research effort to identify child characteristics, including genotypes, that predict the degree of distress displayed by children following a painful medical procedure (i.e., IV insertion). The purpose of this article is to describe the strategies used to integrate molecular genetics methods into this project. The authors discuss the steps needed to complete this process, including (a) establishing a collaboration with genetics researchers and laboratory facilities, (b) developing and implementing a plan to manage biologic samples, and (c) incorporating genetics into the informed consent process.

Child↗
PubMed2000

Legislating for the new predictive genetics.

Many new genetic markers have become available for use in the diagnosis, prognosis or risk prediction of common multifactorial disease such as venous thrombo-embolism, coronary artery disease, dementias and some cancers. Regulation or legislation of their application in the fields of the family, employment, life assurance, confidentiality and property law is required. This is made difficult because of the rapid pace of genetic discoveries and their derived technologies, the diversity of opinions on the legitimate application of these new techniques, and the pluralistic and evolving social norms of society regarding the use of the new genetic methods. This paper examines some of the problems that can arise when regulation is attempted in each of the above fields. A variety of solutions such as referenda, moratoria, ethical codes of professional bodies or the drafting of scientifically accurate and appropriate legislation depending on particular circumstances are discussed as a means of achieving a flexible and responsive approach to the challenges posed by the use of the new genetic markers.

Confidentiality↗
PubMed2006

A biobank management model applicable to biomedical research.

BACKGROUND: The work of Research Ethics Boards (REBs), especially when involving genetics research and biobanks, has become more challenging with the growth of biotechnology and biomedical research. Some REBs have even rejected research projects where the use of a biobank with coded samples was an integral part of the study, the greatest fear being the lack of participant protection and uncontrolled use of biological samples or related genetic data. The risks of discrimination and stigmatization are a recurrent issue. In light of the increasing interest in biomedical research and the resulting benefits to the health of participants, it is imperative that practical solutions be found to the problems associated with the management of biobanks: namely, protecting the integrity of the research participants, as well as guaranteeing the security and confidentiality of the participant's information. METHODS: We aimed to devise a practical and efficient model for the management of biobanks in biomedical research where a medical archivist plays the pivotal role as a data-protection officer. The model had to reduce the burden placed on REBs responsible for the evaluation of genetics projects and, at the same time, maximize the protection of research participants. RESULTS: The proposed model includes the following: 1) a means of protecting the information in biobanks, 2) offers ways to provide follow-up information requested about the participants, 3) protects the participant's confidentiality and 4) adequately deals with the ethical issues at stake in biobanking. CONCLUSION: Until a governmental governance body is established in Quebec to guarantee the protection of research participants and establish harmonized guidelines for the management of biobanks in medical research, it is definitely up to REBs to find solutions that the present lack of guidelines poses. The model presented in this article offers a practical solution on a day-to-day basis for REBs, as well as researchers by promoting an archivist to a pivotal role in the process. It assures protection of all participants who altruistically donate their samples to generate and improve knowledge for better diagnosis and medical treatment.

Biological Specimen Banks↗
PubMed1995

Predictive testing and oncogenes.

Case vignette: sharing unanticipated genetic information. The Questor family has experienced an unusual number of malignancies in the past two generations and has been advised by an oncologist that the p53 oncogene known as Li-Fraumeni Syndrome may be present in the family genome. The option of predictive genetic testing has been raised and several branches of the family have chosen to undergo screening to determine whether they are at risk for cancer because of the gene. Roger and Liz Questor have arranged for screening of themselves and their three children, ages 12, 10, and 7. The couple has, by all appearances, been happily married for 14 years. None of the family members are found to carry the oncogene; however, the geneticist conducting the analyses has made an interesting incidental discovery. The 10-year-old child is not the biological progeny of Roger Questor. Although the 12- and 7-year-olds are clearly the biological children of the couple, it is evident that the 10-year-old born to Liz Questor was fathered by a person other than Roger. What are the ethical obligations of the geneticist with respect to any sharing or disclosure of the information that has been discovered incidentally? What course of action, if any, do you recommend?

Adult↗
PubMed1998

The question not asked: the challenge of pleiotropic genetic tests.

Nearly all of the literature on the ethical, legal, or social issues surrounding genetic tests has proceeded on the assumption that any particular test for a gene mutation yields information about only one disease condition. Even though the phenomenon of pleiotropy, where a single gene has multiple, apparently unrelated phenotypic effects, is widely recognized in genetics, it has not had much significance for genetic testing until recently. In this article, I examine a moral dilemma created by one sort of pleiotropic testing, APOE genotyping, which can yield information about the risk of two different conditions -- coronary heart disease and Alzheimer's disease. A physician administering APOE testing for the beneficial purpose of assessing the risk of heart disease may discover medically useless and socially harmful information about the patient's risk of Alzheimer's disease. I explore how much providers should disclose to patients about pleiotropic test results and whether patients are obligated to know as much about their genetic condition as possible.

Dementia↗