Who should know about our genetic makeup and why?

Takala, Tuija; Gylling, Heta Aleksandra

doi:10.1136/jme.26.3.171

Cited by 17 publications

(4 citation statements)

References 2 publications

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“…The ethical, social and legal issues concerning pharmacogenomics presented in table 1 are familiar to experienced researchers and institutional review boards, because these issues do not differ from those relevant to genetic testing or screening in general as reported in the wider literature on genetics [60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87]. Nevertheless, these issues will probably become even more complex with the entry of drugs based on pharmacogenomics into the public sphere.…”

Section: Discussionmentioning

confidence: 99%

Ethical, Social and Legal Implications of Pharmacogenomics: A Critical Review

Møldrup¹

2001

Public Health Genomics

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Objective: My aim was to examine the ethical, social and legal implications of pharmacogenomics. Method: I performed a critical review of the literature. The primary focal point is the bioethical principle discussed. The second outcome measure is the perspective of the discussion. Results: This review documents that the pharmacogenomics issues of concern are comparable to issues concerning other genetic developments in general. However, two main issues are particular to the case of pharmacogenomics. Firstly, this review reveals that society, industry, groups and individuals appreciate the prospect of pharmacogenomics very differently. Secondly, there is a lack of research into the post-marketing implications of pharmacogenomics. Conclusion: An extensive focus on the ethical, social and legal implications of pharmacogenomics, in terms of both pre- as well as post-marketing issues, is essential. Also, a multidisciplinary approach which includes individual and group opinions in an upfront manner in the research and development process is essential. Otherwise, there is a substantial risk that the positive prospects of pharmacogenomics will not survive due to fear and a lack of acceptance and understanding on the part of the general public.

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Section: Discussionmentioning

confidence: 99%

Ethical, Social and Legal Implications of Pharmacogenomics: A Critical Review

Møldrup¹

2001

Public Health Genomics

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“…In answer to the question, ''Who should know about our genetic makeup and why?'' 6 Tuija Takala and Heta Gylling identify four distinct groups of people: i) me ii) those people who are or who could be genetically linked with me iii) those people with whom I contract, for example, my employer or insurer iv) society at large. I think it is important to note that they were asking a different question: ''Who should know?''…”

Section: Should I Have a Predictive Genetic Test?mentioning

confidence: 99%

When Is My Genetic Information Your Business? Biological, Emotional, and Financial Claims to Knowledge

Wilkinson

2009

Camb Q Healthc Ethics

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Deciding to undergo a predictive genetic test is difficult. The patient has no symptoms that might tip the balance in favor of the test, and knowledge of the information might have significant implications for her physical and mental health, her family, and her financial position. Furthermore, although the decision to undergo many medical tests might reasonably be said to be the patient's own business, it could be argued that predictive genetic tests are different. Dean Bell and Belinda Bennett argue that genetic information has a “shared” or “familial” character due to the likelihood of it affecting others. If others might be affected by the results of your test, then it is certainly plausible to suggest that they have an interest in knowing the information. If that is the case, then it could also be argued that they are entitled to be considered when you are deciding whether to undergo a test.

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“…One of the authors must here declare a particular interest in that John Harris is a member of The Human Genetics Commission. 2 Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and 18 Re T (Wardship: Medical Treatment) [1997] 1 FLR 502, p. 513. 19 That advice consisted of taking medication during the last weeks of pregnancy; undergoing a caesarian section and not breast-feeding the baby.…”

Section: Notesmentioning

confidence: 99%

“…However, the wishes of individuals not to be so informed shall be observed. 2 Further, Takala and Gylling [2] have argued that: As long as people whose genes deviate from those of the average individual are likely to face suspicion and discrimination, societies cannot legitimately force people to know about their genetic composition.…”

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confidence: 99%

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Harris

Keywood

2001

Theoretical Medicine and Bioethics

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People have a powerful interest in genetic privacy and its associated claim to ignorance, and some equally powerful desires to be shielded from disturbing information are often voiced. We argue, however, that there is no such thing as a right to remain in ignorance, where a fight is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances.

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Who should know about our genetic makeup and why?

Abstract: Abstract

Cited by 17 publications

References 2 publications

Ethical, Social and Legal Implications of Pharmacogenomics: A Critical Review

Ethical, Social and Legal Implications of Pharmacogenomics: A Critical Review

When Is My Genetic Information Your Business? Biological, Emotional, and Financial Claims to Knowledge

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