Genetics and democracy—what is the issue?

Hagen, Niclas; Hedlund, Maria; Lundin, Susanne; Mulinari, Shai; Kristoffersson, Ulf

doi:10.1007/s12687-012-0109-x

Cited by 3 publications

(2 citation statements)

References 47 publications

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“…Biomedical research has for a fairly long time interacted with laypeople. This interaction is particularly common among researchers and patient organisations [15] [17] [26]- [28]. A crucial factor for the commitment exerted by various patient organisations is their awareness and knowledge of medical conditions.…”

Section: Discussionmentioning

confidence: 99%

“…However, even though the literature advocates an upstream engagement where laypeople are involved and given influence early in the research process, there is a lack of studies that are empirically grounded in the potential research subjects' experiences [14]. There is little knowledge regarding, among other things, HD-affected individuals' own approach to possible participation in an experimental study and their views on influence [15]. At Lund University, medical research on HD is now about to step from animal models to trials with humans.…”

Section: Introductionmentioning

confidence: 99%

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“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

Lundin¹,

Torkelson²,

Petersen³

2016

OJMP

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

Lundin¹,

Torkelson²,

Petersen³

2016

OJMP

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The Precision Medicine Nation

Sabatello¹,

Appelbaum²

2017

Hastings Center Report

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The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. Drawing on scholarship of nationalism and democracy, we discuss the PMI's construction of what we term “genomic citizenship”; the possible normative obligations arising therefrom; and the ethical, legal, and social challenges that will ensue. Although the PMI is a work in progress, discussion of the existing and emerging issues can facilitate the development of policies, structures, and procedures that can maximize the initiative's ability to produce equitable and socially sensitive outcomes. Our analysis can also be applied to other population‐based, precision medicine research programs.

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Ethics expertise in political regulation of biomedicine: the need of democratic justification

Hedlund

2014

Critical Policy Studies

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Genetics and democracy—what is the issue?

Cited by 3 publications

References 47 publications

“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

“With This Disease, You Take Whatever Chances There Are”—A Study on Socio-Cultural and Psychological Aspects of Experiments Regarding Huntington’s Disease

The Precision Medicine Nation

Ethics expertise in political regulation of biomedicine: the need of democratic justification

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