Pharmacogenetics: the bioethical problem of DNA investment banking

Corrigan, Oonagh; Williams‐Jones, Bryn

doi:10.1016/j.shpsc.2006.06.004

Cited by 28 publications

(25 citation statements)

References 34 publications

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“…Nevertheless, many interesting studies with implications way beyond biobanking have also come about in the process -it has also been fruitful to study the social and ethical implications of biobanking. In particular, the social sciences have contributed a number of insights concerning the dynamics of trust, national and group identity, kinship, failures of benefit-sharing in science, and ethics as policymaking (Busby, 2007;Corrigan and Williams-Jones, 2006;Haddow et al, 2005;Pálsson and Rabinow, 2005;Pálsson, 2007;Prainsack, 2007;Rabinow, 1999;Rose and Novas, 2005;Salter and Jones, 2005). Sadly, there has been limited interaction between the social science literature and the majority of the literature about biobanks, which is published in biological, medical and ethics journals.…”

Section: Discussionmentioning

confidence: 99%

The Ethics of Research Biobanking: A Critical Review of the Literature

Hoeyer

2008

Biotechnology and Genetic Engineering Reviews

100

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Human tissue has been stored and used for research on a regular basis for more than 80 years. During the 1990s, collections of human tissue suddenly became framed as ethical problems in a process reflecting developments in genetic research intertwined with developments in patient rights and steps towards increased commercialization of research. This review describes the process of framing tissue storage as an ethical problem and the solutions proposed in the process. It gives an overview of the academic debate and relates this debate to empirical studies of donor attitudes and interests. It points to the clear discrepancy between the concerns of donors, legislators and ethicists. The academic debate and legislatory action tend to focus on informed consent, and most of the concerns that donors have remain unattended to.

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Section: Discussionmentioning

confidence: 99%

The Ethics of Research Biobanking: A Critical Review of the Literature

Hoeyer

2008

Biotechnology and Genetic Engineering Reviews

100

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“…Some argue that individual consent will be unnecessary in many instances, 65 others suggest that contacting the individual is useless, in particular when dealing with the commercial aspects of biobank research. 66 The dissatisfaction with informed consent as a 'solution' to the problem of ensuring respect for autonomy does not, however, deliver alternative ways of addressing the various aspects of respect for autonomy at stake in biobank research. Some ethicists even suggest that the focus on autonomy in biobank debates has derailed the discussion and sidestepped the virtues of solidarity.…”

Section: Ethical Issuesmentioning

confidence: 99%

“…However, there is no agreement on criteria for the assessment of utility, just as there is no agreement on the ideal beneficiaries understood as the people for whom the biobank is expected to be 'useful'. 66 The establishment of criteria for assessing utility cannot be separated from the establishment of a group of intended beneficiaries. With larger projects and with international collaborations this task becomes more and more complicated and, typically, objectives become more and more abstract the more people you need to enroll: to 'further science' or to 'alleviate disease'.…”

Section: Ethical 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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“…However, many scholars claim that these wide-ranging concerns cannot be simply integrated into individualistic informed consent in postgenomic era (Chadwick and Berg 2001;Manson and O'Neill 2007;O'Neill 2001). By the same token, but specifically in pharmacogenetics context, Corrigan and Williams-Jones (2006) maintain that the rights of patients could not be addressed sufficiently by individually based informed consent. They call for more reciprocity between the researchers and the participants in pharmacogenetics research and broader ethical review (Corrigan and Williams-Jones 2006).…”

Section: Introductionmentioning

confidence: 99%

“…By the same token, but specifically in pharmacogenetics context, Corrigan and Williams-Jones (2006) maintain that the rights of patients could not be addressed sufficiently by individually based informed consent. They call for more reciprocity between the researchers and the participants in pharmacogenetics research and broader ethical review (Corrigan and Williams-Jones 2006).…”

Section: Introductionmentioning

confidence: 99%

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

Soofi

Leeuwen²

2016

J Community Genet

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The one-size-fits-all paradigm of drug development fails to address inter-individual variability in drug response. Pharmacogenetics research aims at studying the role of genotypic differences in drug response. Recently, the pharmaceutical industry has shown interest to embed pharmacogenetics studies in the process of drug development. Nevertheless, population-based and commercial aspects of such futureoriented studies pose challenges for individually based informed consent (IC). As an exemplar of the communal turn to IC procedures, community advisory boards (CABs) have been integrated into different types of medical research. CABs hold the promise of organizing the relationship between participants and researchers in a more reciprocal and participatory way, offering possible means of overcoming the lapses of individualistic IC. However, the involvement of CABs with pharmacogenetics research might be rife with difficulties, uncertainties, and challenges. The current study first reviews the existing literature to discuss added values and challenges of relying on CABs as a supplement to individually based IC. Then, the particular moral and regulatory landscape of pharmacogenetics research will be delineated to argue that community engagement is both necessary and promising beyond the communal turn to IC processes. Three main features of the landscape include (1) new supportive stances that some regulatory bodies have adopted toward pharmacogenetics research, (2) the motivation of the industry to draw reception and trust from the subpopulations, and (3) the important role of the society in generating and embedding pharmacogenetics knowledge. Finally, some points to consider will be discussed to contextualize relying on CABs within this landscape.

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Pharmacogenetics: the bioethical problem of DNA investment banking

Cited by 28 publications

References 34 publications

The Ethics of Research Biobanking: A Critical Review of the Literature

The Ethics of Research Biobanking: A Critical Review of the Literature

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

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

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