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Public health and genetics
Published in Siân Griffiths, Davide J Hunter, Sir Kenneth Calman, New Perspectives in Public Health, 2017
Mark Kroese, Ron Zimmern, Simon Sanderson
Concepts that contribute to public anxiety about genetics include genetic determinism and genetic exceptionalism. Genetic determinism describes the view that the genotype definitely predicts the phenotype irrespective of the impact of environmental factors. Apart from the rare ‘single gene’ disorders this is false. Genetic exceptionalism is the claim that genetic information is sufficiently different from other types of health information that it deserves special protection or other exceptional measures. This remains a controversial claim with diminishing evidence to support it. There has been extensive ELSI research and reports (Burke et al. 2001; Cornish et al. 2003; European Commission Expert Group on the Ethical, Legal and Social Aspects of Genetic Testing 2004; European Society of Human Genetics 2003; Hodge 2004; Knoppers and Chadwick 2005; Tutton and Corrigan 2004). Despite this work there continues to be large gaps in our understanding and there is a need for further studies and discussion across all parts of society. It is only by addressing these areas that the maximum public health benefit can be achieved from the applications of human genetic research.
Research
Published in Alastair V. Campbell, Bioethics, 2017
For all these reasons, special attention has to be paid to the interpretation and control of genetic information. Before the research begins, several policies have to be established: (1) Should family members always be informed about findings relevant to them, and how can we find out if this is what they would want? (2) What results should be fed back to research participants? (3) Who will determine the criteria for clinical significance, and is it right to pass on information about a condition for which there is no prevention or cure? (4) How will the confidentiality of the information be safeguarded, so that research participants do not suffer from discrimination in insurance or employment? (5) How will false generalizations from genetic studies of specific groups be avoided, especially if the media are involved in reporting them? If all of these issues are adequately dealt with at the outset of the research, then it may be possible to avoid what has been called ‘genetic exceptionalism’, that is, giving credence to the idea that ‘it’s all in our genes’, when in fact much of our health and well-being depends on how we conduct our lives and on how our social circumstances promote or threaten our welfare.
Moral and ethical issues: Claims, consequences, and caveats
Published in Priya Hays, Advancing Healthcare Through Personalized Medicine, 2017
Mark Gerstein of Yale Computational Biology describes this dilemma as the fundamental, inherited information that is very private versus the need for large-scale data sharing to enable medical research. If privacy is indeed a problem, then genetic exceptionalism concurs that the genome is potentially very revealing about one’s identity and characteristics. Other risks may be revealed during a study for another trait. Alternatively, study participants might not even care about their genes, to make genomic privacy a conundrum. According to Gerstein, there are tricky privacy considerations in personal genomics. Some genomic information may be meaningless now, but not in 20 years or later down the line. Can true consent be possible when children are considered? Once put on the web, it cannot be taken back. Genomics supports open data, but it is not clear if personal genomics fits this paradigm. There is also the case of HeLa: what if your genetic data could rise to a product line, and what does this mean for ownership of data and consent? However, sharing helps speed research. Large-scale mining of this information is important for medical research, and sharing is important for reproducible research and useful for education.
Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism
Published in The American Journal of Bioethics, 2019
Nanibaa' A. Garrison, Kyle B. Brothers, Aaron J. Goldenberg, John A. Lynch
From our contemporary perspective, we are able to recognize these views on genetic and genomic information as genetic exceptionalism. In fact, for most of us there is no meaningful difference between the view that genetic tests and information need “special” policies, and the idiom of genetic exceptionalism that we use to make arguments about that view. In this discussion, we focus primarily on the idiom—the way of talking or writing about the issue—because the idiom of genetic exceptionalism is often cast as binary. Referring to “genetic exceptionalism” invites disputants to accept that genetic tests and information are exceptional or unique, or to reject that view altogether. When it comes to policy debates related to genetics and genomics, disputants are left with only two options for framing genetic tests and information: it is exceptional, or it is not.
Is Genetic Exceptionalism Past Its Sell-By Date? On Genomic Diaries, Context, and Content
Published in The American Journal of Bioethics, 2019
We failed. Or, to put it more precisely, we looked one by one at the arguments offered for the uniqueness of genetic information in the context of health insurance. None of them, in the end, was convincing. Sometime later on I began using the term “genetic exceptionalism” to denote the claim that genetic information was so distinct in concept, practical implications, and moral import that it deserved to be singled out from other types of health-related information. At that time, influential authors were describing genetic information as “uniquely powerful and uniquely personal” (Annas et al. 1995). In an essay that, I believe, introduced the term in print (Murray 1997), I bundled the various claims into three “concerns”: the argument from genetic prophecy, the concern for kin, and the fear of discrimination. All three concerns were real and relevant, but I argued that none of them justified the ominous warnings that our DNA was a “coded, probabilistic future diary” that others would read and misuse without our knowledge or permission (Annas 1993).
Unpacking the Concept of a Genomic Result
Published in The American Journal of Bioethics, 2019
Rachel Horton, Anneke Lucassen, Angela Fenwick
Advances in technology mean that detection of genetic variants is now easy and cheap, and whether a given variant is present or not is usually unambiguous. However, the clinical meaning of a variant for the person in whom it is identified is often heavily context dependent or unknown. Further opportunities for controversy arise in that although a person’s genetic variants are mostly fixed over their life course, different results may be drawn from their genomic data over time, with different variants rising to prominence as new questions are asked of the same raw data. However, detection of variants and detection of “results” is often conflated. The specter of genetic exceptionalism has distracted from this problem by sabotaging attempts at nuanced discussion as to how we should understand genomic information, forcing a perspective that it must be either globally exceptional, or identical to other medical information. In contrast, genomic contextualism allows us to recognize potential complexity and the need to negotiate core principles regarding what might constitute a genomic result.