Genetic information and testing in insurance and employment: technical, social and ethical issues

Godard, Béatrice; Raeburn, Sandy; Pembrey, M. S.; Bobrow, Martin; Farndon, Peter; Aymé, Ségolène

doi:10.1038/sj.ejhg.5201117

Cited by 74 publications

(63 citation statements)

References 30 publications

(41 reference statements)

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“…These parents can be judged by society, and possibly even by their own child. The solidarity on which health insurance is based can also change when an expensive treatment can be prevented by genetic testing (Godard et al 2003).…”

Section: Hard and Soft Impacts Of Genetic Testingmentioning

confidence: 99%

Reframing and Articulating Socio-scientific Classroom Discourses on Genetic Testing from an STS Perspective

2012

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In recent decades, Science & Technology Studies (STS) have revealed the dynamic interaction between science and technology and society. Technology development is not an autonomous process and its artifacts are not socially inert. Society and technology shape each other. Technologies often have 'soft impacts' in terms of unpredicted side effects on individuals and society. Nevertheless, current societal discourse on technological innovations is still dominated by 'hard impacts' such as quantifiable risks for health, safety and the environment. Furthermore, participants in socio-scientific discourses often underestimate their agency in influencing technological innovations, and at the same time overestimate their freedom of choice to use a technology. Past debates on technological innovations have shown how these debates were framed and often caught in fruitless discourse patterns or arguments. Interventionist STS research experiments with solutions to this problem. Assuming that an STS perspective is helpful in reframing and articulating socio-scientific classroom discourses, the case of genetic testing is used to explore this. An important positive 'hard impact' of genetic testing is disease prevention. However, this is put into perspective by addressing 'soft impacts' such as limited access to certain careers based on genetic risk and changes in the conception of health and the perception of responsibility for one's health. Discussion stoppers such as 'playing God' or 'We can't stop technological advancement' can be challenged through uncovering underlying assumptions. The use of narratives and future scenarios in classrooms seems 123 Sci & Educ (2014) 23:485-507 DOI 10.1007 fruitful in provoking imagination and engaging students in public debates on technological innovations.The message of the gene appears to be equivocal. It promises both certainty, order, predictability, control and helplessness, limitation and acceptance of biological fate. It can stress both similarities and differences. It can discover human relations and at the same time break them off (Ten Have 1995, p. 29; translation from Dutch).

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Section: Hard and Soft Impacts Of Genetic Testingmentioning

confidence: 99%

Reframing and Articulating Socio-scientific Classroom Discourses on Genetic Testing from an STS Perspective

2012

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“…A person's test result will still have implications for his or her family members, and may affect life planning, employment or one's ability to obtain life insurance. 13 However, existing cascade screening programmes for FH have shown little, if any, long-term detrimental effects upon participants' quality of life. 11,14,15 …”

Section: Familial Hypercholesterolaemia (Fh) Cascade Screeningmentioning

confidence: 99%

Cascade testing in familial hypercholesterolaemia: how should family members be contacted?

Newson

Humphries

2005

Eur J Hum Genet

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Cascade testing or screening provides an important mechanism for identifying people at risk of a genetic condition. For some autosomal dominant conditions, such as Familial Hpercholesterolaemia (FH), identifying relatives allows for significant health-affecting interventions to be administered, which can extend a person's life expectancy significantly. However, cascade screening is not without ethical implications. In this paper, we examine one ethically contentious aspect of cascade screening programmes, namely the alternative methods by which relatives of a proband can be contacted. Should the proband be responsible for contacting his or her family members, or should the screening programme contact family members directly? We argue that direct contact is an ethically justifiable method of contact tracing in cascade screening for FH. Not only has this method of contact already been utilised without adverse effects, an examination of the ethical arguments against it shows these are unsubstantiated. We describe several criteria which, if met, will allow an appropriate balance to be struck between maximising the efficiency of family tracing and respecting the interests of probands and their relatives.

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“…In a concise sentence, the ESHG (Godard et al 2003 Tackling also with insurance, the ASHG (2000), in a practical manner (because of the possible need for "additional oversight"), suggests restricting the definition of genetic tests to:…”

Section: Scope Of Definitionsmentioning

confidence: 99%

The wide variation of definitions of genetic testing in international recommendations, guidelines and reports

et al. 2012

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In spite of being very commonly used, the term genetic testing is debatable and used with several meanings. The diversity of existing definitions is confusing for scientists, clinicians and other professionals, health authorities, legislators and regulating agencies and the civil society in general, particularly when genetic testing is the object of guidelines or legal documents. This work compares definitions of genetic testing found in recommendations, guidelines and reports from international institutions, policy makers and professional organizations, but also in documents from other stakeholders in the field, as the pharmaceutical industry, insurers, ethics bodies, patient organizations or human-rights associations. A systematic review of these documents confirmed the extreme variability existing in the concepts and the ambiguous or equivocal use of the term. Some definitions (narrower) focus on methodologies or the material analysed, while others (broader) are information-or context-based. Its scope may range from being synonymous of just DNA analysis, to any test that yields genetic data. Genetic testing and genetic information, which may be derived from a range of medical exams or even family history, are often used interchangeably. Genetic testing and genetic screening are sometimes confused. Human molecular genetics (a discipline) is not always distinguished from molecular biology (a tool). Professional background, geographical context and purpose of the organizations may influence scope and usage. A common consensus definition does not exist. Nevertheless, a clear set of precise definitions may help creating a common language among geneticists and other health professionals. Moreover, a clear contextdependent, operative definition should always be given.

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Genetic information and testing in insurance and employment: technical, social and ethical issues

Cited by 74 publications

References 30 publications

Reframing and Articulating Socio-scientific Classroom Discourses on Genetic Testing from an STS Perspective

Reframing and Articulating Socio-scientific Classroom Discourses on Genetic Testing from an STS Perspective

Cascade testing in familial hypercholesterolaemia: how should family members be contacted?

The wide variation of definitions of genetic testing in international recommendations, guidelines and reports

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