Population Biobanks: The Ethical Gravity of Informed Consent

Brekke, Ole Andreas; Sirnes, Thorvald

doi:10.1017/s1745855206004029

Cited by 34 publications

(6 citation statements)

References 12 publications

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“…The crux of the concern relates to the ability of a potential research participant to give truly informed consent for a research project in which potential outcomes and effects are unknown, and when the precise nature of future research to be conducted may not yet be conceived[35-39]. Many of these concerns remain similar in the context of microbiome research, where individuals may be asked to give specimens to be deposited in research banks for an indefinite period of time and for an undefined or loosely defined purpose.…”

Section: Discussionmentioning

confidence: 99%

"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies

Hawkins

O’Doherty

2011

BMC Med Genomics

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BackgroundWhile the social, ethical, and legal implications of biobanking and large scale data sharing are already complicated enough, they may be further compounded by research on the human microbiome.DiscussionThe human microbiome is the entire complement of microorganisms that exists in and on every human body. Currently most biobanks focus primarily on human tissues and/or associated data (e.g. health records). Accordingly, most discussions in the social sciences and humanities on these issues are focused (appropriately so) on the implications of biobanks and sharing data derived from human tissues. However, rapid advances in human microbiome research involve collecting large amounts of data on microorganisms that exist in symbiotic relationships with the human body. Currently it is not clear whether these microorganisms should be considered part of or separate from the human body. Arguments can be made for both, but ultimately it seems that the dichotomy of human versus non-human and self versus non-self inevitably breaks down in this context. This situation has the potential to add further complications to debates on biobanking.SummaryIn this paper, we revisit some of the core problem areas of privacy, consent, ownership, return of results, governance, and benefit sharing, and consider how they might be impacted upon by human microbiome research. Some of the issues discussed also have relevance to other forms of microbial research. Discussion of these themes is guided by conceptual analysis of microbiome research and interviews with leading Canadian scientists in the field.

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Section: Discussionmentioning

confidence: 99%

"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies

Hawkins

O’Doherty

2011

BMC Med Genomics

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“…Furthermore, these donors do not necessarily trust informed consent practices to effectually ensure their interests, and in some instances the consent form is viewed as protecting the researcher rather than the donor [28,31,32]. …”

Section: Consent and Re-consent: One Size Fits All?mentioning

confidence: 99%

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

Hoeyer

2009

Public Health Genomics

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Background: Many studies have explored public perspectives on when and how to provide informed consent to biobank research and when to get feedback on research results. Little has been done to explore overarching trends in these studies. Methods: The article is based on a critical reading of the literature found through Medline searches and the PRIVILEGED project compilation of empirical studies. Results: I suggest that tissue type, procurement situation including who is asked to provide consent, and the biobank’s geographical, social and historical context influence how various potential donors view the issues of consent, re-consent, and feedback of research results. In light of this, universal ethical standards for informed consent to and feedback of research results from biobank research seem to run contrary to the diversity of perceptions and expectations among different donors. Conclusion: To respect donor interests, it is necessary to pay more attention to diversity with regard to biobank types and different contexts for donation. We should avoid assuming that words like ‘biobank’ and ‘donor’ can be used in a generic sense – always referring to the same – if we wish to respect and care for the diverse group of individuals who comprise the donating public.

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“…This confusion of diagnostics and treatment (in some ways similar to Pakistan) should not necessarily be seen as indicative of poor information practices, as this area of genetic counseling has long had a blurred boundary—families therefore might very well have felt little difference between finding out about their mutation in the first place, and the specific invitation to take part in the research project we were investigating. Also, several ethnographic studies of genetic research participation in the Nordic countries have found that people do not read, remember, and use the information offered in conjunction with the informed consent process (Brekke & Sirnes, 2006; Hoeyer, 2003; Skolbekken, Ursin, Solberg, Christensen, & Ytterhus, 2005).…”

Section: Resultsmentioning

confidence: 99%

“…Yet while still heralded as a basic principle in research ethics, informed consent procedures have been subject to increasing criticism from scholars studying the ideals of autonomy and protection in practice. This criticism appears to follow two strands: One focuses primarily on topics related to “compliance” to the informed consent ideal due to lack of audit, assessment, and monitoring of procedures that make them culturally appropriate (Artizzu, 2008; Beskow et al, 2001; Bhutta, 2004; Burke, Evans, & Jarvik, 2014; Skovdal & Abebe, 2012; Sugarman et al, 2005); the other strand attacks the normative underpinnings of the informed consent procedures and the link established between information and consent, as it is said to silence social context known to influence choice of participation, while propagating an inadequate understanding of agency (Arnason, 2004; Brekke & Sirnes, 2006; Felt, Bister, Strassnig, & Wagner, 2009; Hoeyer & Hogle, 2014; Reardon, 2004). In this study, we suggest that these experiences should imply moving beyond discussions of informed consent when looking for the types of information exchanges important to research participants.…”

Section: Information Exchange As a Meaning-making Practicementioning

confidence: 99%

“Stop TalkingtoPeople; TalkwithThem”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

Sheikh

Hoeyer

2018

Journal of Empirical Research on Human Research Ethics

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This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

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Population Biobanks: The Ethical Gravity of Informed Consent

Cited by 34 publications

References 12 publications

"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies

"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

“Stop TalkingtoPeople; TalkwithThem”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

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