Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results

Hayeems, Robin Z.; Miller, Fiona A.; Li, Li; Bytautas, Jessica P

doi:10.1038/ejhg.2011.34

Cited by 25 publications

(25 citation statements)

References 49 publications

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“…An additional and related finding is that perceived obligations to ensure access to information and care were more likely among those with a clinical orientation and less likely among those with a statistical/epidemiological role. Taken together, these findings confirm to what we have shown with respect to attitudes toward an initial reporting obligation, 17,23 suggesting that the more clinically relevant the result or clinically-disposed the respondent, the greater is the commitment to the obligation. Abbreviations: A, agree; D, disagree; N, neutral; NS, not statistically significant; SA, strongly agree; SD, strongly disagree.…”

Section: Discussionsupporting

confidence: 88%

“…23 With approval from the University of Toronto and the Hospital for Sick Children Research Ethics Boards, we conducted an international survey of researchers engaged in CF or ASD genetics research in 2009. We identified potential respondents from author lists of relevant scientific articles published between 2005 and 2008.…”

Section: Materials and Methods Samplementioning

confidence: 99%

“…Following each vignette, respondents were asked to consider four judgments, two of which related to the decision to report the initial result and have been reported elsewhere. 23 The focus of this paper concerns judgments about cascading obligations assuming that the initial report had occurred. Specifically, whether the research team should: (i) 'ensure that participants gain access to updated information about this genetic variation (as specified in the vignette), if new research becomes available?'…”

Section: Survey Instrumentmentioning

confidence: 99%

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One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants

Miller

Hayeems

et al. 2012

Eur J Hum Genet

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Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (Po0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.

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Section: Discussionsupporting

confidence: 88%

Section: Materials and Methods Samplementioning

confidence: 99%

Section: Survey Instrumentmentioning

confidence: 99%

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One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants

Miller

Hayeems

et al. 2012

Eur J Hum Genet

Self Cite

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“…Due to the potential scientific uncertainty of some findings, 45 such an approach would provide researchers with much needed professional leverage and avoid both stringent and open-ended obligations.…”

Section: Untying the Gordian Knot: Elements To Considermentioning

confidence: 99%

International normative perspectives on the return of individual research results and incidental findings in genomic biobanks

Zawati

Knoppers

2012

Genetics in Medicine

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Managers of genomic biobanks constantly face ethical and legal challenges ranging from issues associated with the informed consent process to procedural concerns related to access by researchers. Yet, with the availability of next-generation sequencing technologies, one topic is emerging as the focus of ongoing debate: the return of individual research results and incidental findings to participants. This article examines this topic from an international perspective, where policies and guidelines discussing the matter in the context of genomic biobanks and genomic research are analyzed and commented. This approach aims to highlight the shortcomings of these international norms, mainly the danger arising from both the therapeutic misconception and the conflation of research results with incidental findings. This article suggests some elements to consider in order to complement available guidance at the international level. 2012:14(4):484-489 Genet Med

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“…If the policy were to be changed, would all participants have to be reconsented? Most researchers accessing biobanks in the future may be using whole genome sequencing technologies even though most information gathered is still indecipherable (Hayeems et al 2011). Irrespective, the possibility of incidental findings of clinical significance remains (Bredenoord et al 2011).…”

mentioning

confidence: 99%

The art and science of biobanking

Knoppers

Hudson

2011

Hum Genet

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Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results

Cited by 25 publications

References 49 publications

One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants

One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants

International normative perspectives on the return of individual research results and incidental findings in genomic biobanks

The art and science of biobanking

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