Gene Concepts and Genethics: Beyond Exceptionalism

Abstract

The discursive explosion that was provoked by the new genetics could support the impression that the ethical and social problems posed by the new genetics are somehow exceptional in their very nature. According to this view we are faced with special ethical and social problems that create a challenge so fundamental that the special label of genethics is needless to justify. The historical account regarding the evolution of the gene concepts could serve us to highlight the limits of what we know about genes and what we can do with genes. The widespread notion about the exceptionality of genetic knowledge and its applicative possibilities is hardly justifiable and leads to misunderstandings regarding the conceptualization of the ethical and social problems we might face. Following a more realistic interpretation of the role of genes in human life we might avoid a whole set of fictive dilemmas and counterproductive regulatory efforts in bioethics. Bioethical discourse should move from the gene-centered scientific discourse toward the more sophisticated and complex discourses where human development represented as a matter of complex interactions between genomes and environments, between genes, educational factors, nutritional regimes, and other different developmental resources. If a gene is seen as one among the different developmental resources that are shaping a given human trait then both genethics and genetic exceptionalism could hardly be represented as a justified approach in discussing the ethical and social problems of genetics.

Genetics specialists’ perspectives on disclosure of genomic incidental findings in the clinical setting

“…While some have argued there are unique ethical challenges in the management of genomic information that necessitate use of documented informed consent procedures [11], others argue for non-exceptionalism, i.e., the issues are not unique and should be treated similarly to other sensitive health information [25–27]. Our findings suggest that the need to obtain patients’ permission prior to IF disclosure is not clear cut.…”

Attitudes toward Genetic Research Review: Results from a Survey of Human Genetics Researchers

“…Most respondents believed that IRBs should review genetic research applications the same way they review other biomedical research applications. These results suggest that, in the ongoing debate about genetic exceptionalism [17,18,19], most investigators working in the field may consider genetic information to be one more kind of health information, deserving of the same level of protection as other such data.…”

You Never Call, You Never Write: Why Return of ‘omic‘ Results to Research Participants is Both a Good Idea and a Moral Imperative

“…What is clear is that each is rooted in genetic exceptionalism, that is, the idea that the ‘immutable’ nature of DNA and its perceived role in shaping human identity warrants a paternalistic, hands-on approach so as to protect people from their own genetic selves, a standard that is not demanded by other types of health information [58,59]. Recent data suggest, however, that even for relatively deterministic susceptibility mutations for late-onset disorders such as hereditary breast cancer and Huntington’s disease, disclosure is unlikely to produce long-term negative consequences for those who desire such information [60–62].…”