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At least 217 records · Page 12Linked to original sources
PubMed2004

Rethinking the 'right not to know'.

The idea that an individual has a 'right not to know' genetic information about himself or herself is entrenched in both the policy sphere and the genetic counselling ethos. In this paper, I interrogate this idea of a 'right not to know', questioning particularly its status as a right. I identify the conception of rights that seems to underlie the posited 'right not to know' as a conception of rights in which they are prioritised non-outweighable interests. Turning to a series of hypothetical situations in which the 'right not to know' is invoked, I argue that the 'right not to know' is not a right consistent with such a conception. The 'right not to know' can only exist in a framework of rights in which they lack significant moral weight. Thus, considering the gravity of rights in popular understanding, I suggest caution in continuing use of the phrase 'right not to know' in the context of genetic testing. This investigation suggests that structuring the debate around genetic ignorance in terms of the 'right not to know' is not conducive to moving forward ethical thinking in this area.

Genetic Counseling↗
PubMed2007

[Genetic diagnostics as a legislation project. Regulatory initiatives and main areas of regulation].

The legislation project of a law on genetic diagnostics appears to have come to a standstill; however, it should be taken up again. The national and international discussion underlines the need for regulation. This assessment is based on the dynamic developments in the field of biological and medical sciences and the resulting problems for medical practice, the healthcare system, commercial in terests and, not least, patients, volunteers and clients. The German legislators cannot only build on the preparatory work of political advisory institutions and commissions; besides current legislation in neighbouring countries, several regulatory drafts have been prepared in Germany, which provide important normative material for legislative work. However, these drafts also reflect the conflicts of interest and assessment arising from such a project. Legislation on genetic diagnostics is not only concerned with differing focal points of regulation and numerous questions of detail but also with decisions on fundamental normative orientations and principles of regulation.

Conflict of Interest↗
PubMed2003

Predictive genetic testing in urology: ethical and social issues.

In order to maximize the benefits of predictive genetic testing in urology, the potential ethical and social risks must be identified and minimized. Necessary steps include providing adequate information for patients and families; preparing them to receive test results; maintaining confidentiality to avoid social stigma and discrimination; preserving the principal of solidarity to provide assurances of medical care and social support for persons at risk of genetic illness; and avoiding inappropriate social pressure to prevent the birth of at-risk individuals. Health professionals must play a significant role in helping individuals, families, and society in general to make sound testing decisions and policy.

Genetic Counseling↗
PubMed2004

Genetic screening, health care and the insurance industry. Should genetic information be made available to insurers?

The potential use of genetic tests in insurance has raised concerns about discrimination and individuals losing access to health care either because of refusals to test for treatable diseases, or because test-positives cannot afford premiums. Governments have so far largely sought to restrict the use of genetic information by insurance companies. To date the number of tests available with significant actuarial value is limited. However, this is likely to change, raising more clearly the question as to whether the social costs of adverse selection outweigh the social costs of individuals not accessing health care for fear of the consequences of test information being used in insurance markets. In this contribution we set out the policy context and model the potential trade-offs between the losses faced by insurers from adverse selection by insurees (which will increase premiums reducing consumer welfare) and the detrimental health effects that may result from persons refusing to undergo tests that could identify treatable health conditions. It argues that the optimal public policy on genetic testing should reflect overall societal benefit, taking account of these trade-offs. Based on our model, the factors that influence the outcome include: the size of and value attached to the health gains from treatment; deterrent effects of a disclosure requirement on testing for health reasons; incidence of the disease; propensity of test-positives to adverse select; policy value adverse selectors buy in a non-disclosure environment; and price elasticity of demand for insurance. Our illustrative model can be used as a benchmark for developing other scenarios or incorporating real data in order to address the impact of different policies on disclosure and requirement to test.

Genetic Privacy↗
PubMed2006

Guidelines for disclosing genetic information to family members: from development to use.

This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.

Canada↗
PubMed2006

Familial neuroendocrine tumor syndromes: from genetics to clinical practice.

Thanks to recent developments in molecular biology and cancer genetics, genetic testing has become widely available and useful in several kinds of familial tumor syndrome. However, the impact of genetic testing on medical management is not always straightforward. Clinicians have to consider the psychological impact and ethical complexities of communicating hereditary cancer risk information to families. This review notes some points on genetic counseling before and after genetic testing for familial neuroendocrine tumor syndromes.

Adult↗
PubMed2000

The use of genetic test information in insurance: the argument from indistinguishability reconsidered.

In the bioethical literature, discrimination in insurance on the basis of genetic risk factors detected by genetic testing has been defended and opposed on various ethical grounds. One important argument in favour of the practice is offered by those who believe that it is not possible to distinguish between genetic and non-genetic information, at least not for practical policy purposes such as insurance decision-making. According to the argument from indistinguishability, the use of genetic test information for insurance purposes should be permitted, because genetic test information is no different from non-genetic medical information in any relevant respect, therefore it would be inconsistent to prohibit the former whilst permitting the latter. This paper discusses and defends this argument and suggests a new, more tenable foundation.

Ethics, Medical↗
PubMed1979

Legal and social issues in medical genetics.

This paper was written for the purpose of providing the physician with a perspective of the conflicting scientific, individual, and societal interests which have been evoked by increasing medical and scientific innovation in the area of human genetic disease. In it the following subjects are considered: (1) obtaining genetic information by amniocentesis, by genetic counseling, and by screening; (2) disclosure of genetic data to the patient; (3) inclusion of genetic data on the medical record; (4) courses of action available to the individual after disclosure of genetic information, i.e., abortion, sterilization, etc.; (5) the state and involuntary sterilization; and (6) prohibitions on marriage.

Abortion, Legal↗
PubMed2006

Genetic testing for hereditary cancers: the impact of gender on interest, uptake and ethical considerations.

Genetic testing promises earlier intervention and more successful outcomes for individuals at risk for hereditary breast/ovarian and colorectal cancer. Research shows that gender influences health and access to health care services. In this paper, we review theoretical issues of gender, and research outcomes, in relation to genetic testing for hereditary cancers. We argue that integrating a gender analysis into assessment of new technologies and health programs is necessary to improve appropriateness, accessibility and effectiveness. Attention to gender is also critical to developing a deeper understanding of the ethical issues (both benefits and harms) raised by new genetic technologies.

Bioethical Issues↗
PubMed2004

The importance of ignorance.

The need for people to keep their genetic data confidential is crucial to help exploit medical advances, a key British Committee believes. Nigel Williams reports.

Databases, Genetic↗
PubMed2006

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease.

OBJECTIVE: Genetics increasingly permeate everyday medicine. When patients want to make informed decisions about genetic testing, they require genetic knowledge. This study examined the genetic knowledge and attitudes of patients with chronic diseases, and the relationship between both. In addition, patients were asked about their preferred source of genetic information. METHODS: Questionnaires were mailed to participants of a nationwide representative sample of patients with chronic diseases in the Netherlands (n = 1916). RESULTS: The response rate was 82% (n = 1496). Perceived genetic knowledge was low, particularly among older and lower educated patients. Attitudes towards genetics were rather positive, especially among younger and higher educated patients. Some concerns were also documented, mainly about the consequences of genetic testing for employment and taking insurance. Patients who perceived to have little knowledge found it difficult to formulate an opinion about genetic testing. Higher levels of genetic knowledge were associated with a more favourable attitude towards genetics. Chronic patients prefer to receive genetic information from their GP. CONCLUSION: Chronic patients are ill prepared when they require genetic knowledge to make decisions regarding the treatment of their disease. This seems to result from a knowledge deficiency rather than from disagreement with the genetic developments. PRACTICE IMPLICATIONS: When chronic patients are in need of information about genetics or genetic testing, their general practitioner should provide this.

Adolescent↗
PubMed2005

Perspectives on use and protection of genetic information in work settings: results of a preliminary study.

The societal use of genetic information raises ethical concerns, and the views of working persons regarding genetic information have received little attention. We performed an empirical project to characterize perspectives of 63 employees at two sites who expressed strong interest in learning about and protecting their personal genetic information. Genetic data were seen as more sensitive than other health data, and disclosure of genetic susceptibility was perceived as having negative consequences. This study suggests the value of exploring the perspectives of key stakeholders most directly affected by genetic applications across diverse societal settings.

Adult↗