Stakeholder Views on Returning Research Results

Haga, Susanne B.; Zhao, Jennifer Q.

doi:10.1016/b978-0-12-407703-4.00002-5

Cited by 19 publications

(13 citation statements)

References 176 publications

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“…This supports findings that research participants often feel that participation in a biobank should be mutually beneficial and express interest in receiving personally relevant clinically significant results ( i.e. , actionable results) [ 35 , 36 , 37 , 38 ]. Returning such results, however, also have the potential to do harm for reasons such as difficulties in understanding genetic risk information [ 39 ], the uncertain actionability of some genetic research findings, and the radical actions some participants may take with genetic research findings due to their anxieties and fears.…”

Section: Discussionsupporting

confidence: 77%

Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland

Overby

Maloney

Alestock

et al. 2015

JPM

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Background: Achieving high participation of communities representative of all sub-populations is needed in order to ensure broad applicability of biobank study findings. This study aimed to understand potentially mutable attitudes and opinions commonly correlated with biobank participation in order to inform approaches to promote participation in biobanks. Methods: Adults from two University of Maryland (UMD) Faculty Physicians, Inc. outpatient practices were invited to watch a video and complete a survey about a new biobank initiative. We used: Chi-square to assess the relationship between willingness to join the biobank and participant characteristics, other potentially mutable attitudes and opinions, and trust in the UMD. We also used t-test to assess the relationship with trust in medical research. We also prioritize proposed actions to improve attitudes and opinions about joining biobanks according to perceived responsiveness. Results: 169 participants completed the study, 51% of whom indicated a willingness to join the biobank. Willingness to join the biobank was not associated with age, gender, race, or education but was associated with respondent comfort sharing samples and clinical information, concerns related to confidentiality, potential for misuse of information, trust in UMD, and perceived health benefit. In ranked order, potential actions we surveyed that might alleviate some of these concerns include: increase chances to learn more about the biobank, increase opportunities to be updated, striving to put community concerns first, including involving community members as leaders of biobank research, and involving community members in decision making. Conclusions: This study identified several attitudes and opinions that influence decisions to join a biobank, including many concerns that could potentially be addressed by engaging community members. We also demonstrate our method of prioritizing ways to improve attitudes and opinions about joining a biobank according to perceived responsiveness.

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Section: Discussionsupporting

confidence: 77%

Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland

Overby

Maloney

Alestock

et al. 2015

JPM

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“…Previous studies largely focused on understanding the perspectives of research participants and patients related to genetic and genomic testing in the context of their ethical, legal, policy, and social implications (ELSI). Surveys, interviews, and focus groups reveal several lingering concerns, such as (1) who will have access to genetic test information, especially when the information is in electronic medical records (Beskow and Dean 2008 ; Hull et al 2008 ; Kettis-Lindblad et al 2006 ; McGuire et al 2008 ; Trinidad et al 2010 ), (2) will genetic research data be shared with outside investigators (Abraham et al 2014 ; Kaufman et al 2009 ; Ludman et al 2010 ; Rahm et al 2013 ), and (3) will individuals have access to their own genetic research data (Godard et al 2007 ; Haga and Zhao 2013 ; Ormond et al 2009 ). These studies suggest that privacy and confidentiality are particularly important in the context of discrimination by insurers and employers who may have access to genetic information (Wong et al 2004 ).…”

Section: Introductionmentioning

confidence: 99%

Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder

Wagner

McCormick

Barns

et al. 2019

J Autism Dev Disord

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Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n = 131), non-ASD developmental delay (n = 39), and typical development (n = 74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p = 0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology.

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“…There is an emerging consensus in the ethics literature 24,29,30,31,31 and professional guidelines that all data that are believed to be clinically ‘actionable’ should be fed back to patients or participants. This consensus is supported by empirical data showing that most people wish to receive information about those data whether it concerns the condition under investigation or an unexpected, incidental secondary finding . In the context of reproductive medicine, however, the concept of ‘actionability’ is likely to prove contested and value‐laden.…”

Section: Ethical Issuesmentioning

confidence: 99%

Opening Pandora's box?: ethical issues in prenatal whole genome and exome sequencing

2017

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ObjectiveThe development of genomic approaches to prenatal testing such as whole genome and exome sequencing offers the potential for a better understanding of prenatal structural anomalies in the fetus and ultimately for improved patient care and more informed reproductive decision making. In addition to the scientific and clinical challenges of achieving this, the introduction of new reproductive technologies also presents a number of ethical problems. The successful and appropriate development and introduction of prenatal genomics into clinical practice require these problems to be identified, understood and carefully analysed in the development of models of good ethical practice.MethodWe conducted a critical review of the existing literature on ethical issues in prenatal genomics.ResultsWe identified and discussed five areas of particular concern: valid consent, management and feed‐back of information, responsibilities of health professionals, priority setting and resources and duties towards the future child.ConclusionThere is a need for further discussion of the issues we have outlined here, and we hope that this brief summary of ethical arguments in the literature encourages researchers, clinicians, patients and scientists to engage in further discussion of these and other important issues raised by prenatal genomics. © 2017 The Authors. Prenatal Diagnosis published by John Wiley & Sons, Ltd.

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Stakeholder Views on Returning Research Results

Cited by 19 publications

References 176 publications

Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland

Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland

Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder

Opening Pandora's box?: ethical issues in prenatal whole genome and exome sequencing

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