Conflicting Notions of Personhood in Genetic Research

Høyer, Klaus

doi:10.1111/1467-8322.00129

Cited by 37 publications

(24 citation statements)

References 2 publications

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“…29,30 It has been pointed out, however, that for many biobank research participants, the genetic material is no more special than the phenotypic information also required to make a biobank into a valuable research resource. 31 All the same, when biobanks facilitate research into the various risk factors associated with disease, it potentially influences societal conceptions of responsibility, group identity and future options. The larger the biobank, the stronger the statistical strength, the bigger the potential for epistemic changes.…”

Section: Social Issuesmentioning

confidence: 99%

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Hoeyer¹

2012

Nor J Epidemiol

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During the past ten years the complex ethical, legal and social issues (ELSI) typically surrounding large-scale genetic biobank research initiatives have been intensely debated in academic circles. In many ways genetic epidemiology has undergone a set of changes resembling what in physics has been called a transition into Big Science. This article outlines consequences of this transition and suggests that the change in scale implies challenges to the roles of scientists and public alike. An overview of key issues is presented, and it is argued that biobanks represent not just scientific endeavors with purely epistemic objectives, but also political projects with social implications. As such, they demand clever maneuvering among social interests to succeed.

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Section: Social Issuesmentioning

confidence: 99%

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Hoeyer¹

2012

Nor J Epidemiol

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“…But the status as active participating citizens also comes with obligations, and some people, therefore, seem merely interested in a more altruistic-donor approach (Hoeyer 2002). Accordingly, scientists and stakeholders will have to attend to those diVerent public approaches.…”

Section: Biobank-public Interactionmentioning

confidence: 99%

Biobanks and the phantom public

2011

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This paper surveys the current state of knowledge about the relationship between different national publics and biobanks, how different publics perceive biobanks, and which issues are identified as important by various stakeholders. We discuss existing studies and emerging governance strategies dealing with the biobank-publics interface and argue that the search for phantom (biobank) public(s) is on, but still much needs to be done. We argue that the existing data originate in a relatively few regions, among them Northern Europe, the United Kingdom, and in certain U.S. states and are often based on survey research with small samples and short questionnaires. Combined usage of qualitative and quantitative methodology in studies is still rare though of great importance in order to investigate distributions of public opinion and also to be able to explain these patterns. Many important questions in the relationship between publics and biobanks are unexplored, or the existing data are inconsistent.

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“…In my study, I have observed and interviewed 57 potential donors as they were invited to participate in the biobank collection, as described in more detail elsewhere (Hoeyer, 2002(Hoeyer, , 2003(Hoeyer, , 2005. In contrast to the four problematizations at the policymaking level, I found that (1) Some donors do not find blood samples particularly important; they are much more concerned about ensuring appropriate access to phenotypic information, a concern that the policy does not address although a questionnaire is submitted along with the blood sample; (2) Most donors do not see their own interests as divergent from those of the surrounding society which in fact is why they often donate in the first place; (3) Few donors actually read or care about the information offered in the informed consent process.…”

Section: A Case Study: Umangenomics and The Study Of Ethics As Policymentioning

confidence: 99%

“Ethics wars”: Reflections on the Antagonism between Bioethicists and Social Science Observers of Biomedicine1

Hoeyer

2006

Hum Stud

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Social scientists often lament the fact that philosophically trained ethicists pay limited attention to the insights they generate. This paper presents an overview of tendencies in sociological and anthropological studies of morality, ethics and bioethics, and suggests that a lack in philosophical interest might be related to a tendency among social scientists to employ either a deficit model (social science perspectives accommodate the sense of context that philosophical ethics lacks), a replacement model (social scientists have finally found the ''right way'' of doing ethics), or a dismissal model (ethics should be abandoned all together as a misconstrued veil of power). Increased awareness of differences in styles of reasoning and objects of research interest might help to overcome the hostility, and an anthropological project is presented as an invitation to a dialogue informed by awareness of such differences.

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Conflicting Notions of Personhood in Genetic Research

Cited by 37 publications

References 2 publications

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Size matters: the ethical, legal, and social issues surrounding large-scale genetic biobank initiatives

Biobanks and the phantom public

“Ethics wars”: Reflections on the Antagonism between Bioethicists and Social Science Observers of Biomedicine1

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