Dataset Information

Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

ABSTRACT: Genome-wide sequencing in a research setting has the potential to reveal health-related information of personal or clinical utility for the study participant. There is increasing pressure to return research findings to participants that may not be related to the project aims, particularly when these could be used to prevent disease. Such secondary, unsolicited or 'incidental findings' (IFs) may be discovered unintentionally when interpreting sequence data, or as the result of a deliberate opportunistic screen. This cross-sectional, web-based survey investigated attitudes of 6944 individuals from 75 countries towards returning IFs from genome research. Participants included four relevant stakeholder groups: 4961 members of the public, 533 genetic health professionals, 843 non-genetic health professionals and 607 genomic researchers who were invited via traditional media, social media and professional e-mail list-serve. Treatability and perceived utility of incidental results were deemed important with 98% of stakeholders personally interested in learning about preventable life-threatening conditions. Although there was a generic interest in receiving genomic information, stakeholders did not expect researchers to opportunistically screen for IFs in a research setting. On many items, genetic health professionals had significantly more conservative views compared with other stakeholders. This finding demonstrates a disconnect between the views of those handling the findings of research and those participating in research. Exploring, evaluating and ultimately addressing this disconnect should form a priority for researchers and clinicians alike. This social sciences study offers the largest dataset, published to date, of attitudes towards issues surrounding the return of IFs from sequencing research.

SUBMITTER: Middleton A

PROVIDER: S-EPMC4795240 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature

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Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

Middleton Anna A Morley Katherine I KI Bragin Eugene E Firth Helen V HV Hurles Matthew E ME Wright Caroline F CF Parker Michael M

European journal of human genetics : EJHG 20150429 1

Genome-wide sequencing in a research setting has the potential to reveal health-related information of personal or clinical utility for the study participant. There is increasing pressure to return research findings to participants that may not be related to the project aims, particularly when these could be used to prevent disease. Such secondary, unsolicited or 'incidental findings' (IFs) may be discovered unintentionally when interpreting sequence data, or as the result of a deliberate opport ...[more]

PMID: 25920556

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Project description:INTRODUCTION:Penile transplantation, in its infancy, has the potential to reestablish functional outcomes for men with penile loss and disfigurement. However, significant bioethical considerations are pertinent, and systematic discussions are necessary to safely progress implementation. AIM:To determine the attitude of health practitioners toward the penile transplant and identify the key aspects of concern pertinent to the operation and clinical care. METHODS:Health care professionals from the United States responded to either email invitation, web link, or social media post on Facebook to complete a questionnaire investigating perceptions and attitudes toward penile transplantation. MAIN OUTCOME MEASURES:Respondents' attitude toward penile transplantation, their own perceived important functions of the penis, and concerns about performing a penile transplantation. Respondents' previous exposure to visceral transplants, to penile disfigurement, and information about penile transplants were used as independent factors in analysis. RESULTS:Among 412 health care professionals who responded to the questionnaire, 95.9% were in favor of visceral organ transplant, but only 64.3% were in favor of penile transplantation. The results showed that 61.3% of respondents first learned about the penile transplant from mass media, whereas only 37.5% had been exposed through a scientific journal, formal lecture, or a professional colleague. Younger health professionals and those exposed through professional forums surrounding penile transplantation were more likely to be in favor of the procedure (P < .001). The most important functions of the penis were identified by respondents as being sexual function (role in sexual activity) and gender identity (being a man) with rates of 86.4% and 85.3%, respectively (P < .001). Barriers identified by respondents included the use of immunosuppression and the potential subsequent effect on healthcare resource utilization. Reading an excerpt about penile trauma in war during the questionnaire improved acceptance of penile transplantation (P = .05). CONCLUSION:Penile transplantation is accepted by most health professionals surveyed. Younger respondents and those informed through professional outlets are more favorable toward penile transplantation. Anticipated limitations include the risk of immunosuppression, lack of available donors, and the effect on healthcare utilization. Najari B, Flannigan R, Hobgood J, et al. Attitudes Toward Penile Transplantation Among Urologists and Health Professionals. Sex Med 2018;6:316-323.

Dataset Information

Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

Publications

Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

Similar Datasets

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