Community dissemination and genetic research: Moving beyond results reporting

Trinidad, Susan Brown; Ludman, Evette; Hopkins, Scarlett E.; James, Rosalina; Hoeft, Theresa J.; Kinegak, Annie; Lupie, Henry; Kinegak, Ralph; Boyer, Bert B.; Burke, Wylie

doi:10.1002/ajmg.a.37028

Cited by 34 publications

(23 citation statements)

References 31 publications

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“…Representative examples include studies of 20 participants in a United Kingdom trial of prenatal antibiotics 19 ; 24 potential participants (or parents of potential participants) in a study testing children for neurodevelopmental deficits 22 ; 44 participants in a United Kingdom dementia study 23 ; 135 U.S. participants in a phase II trial of breast excision as breast cancer treatment 24 ; 409 Canadian and U.S. parents of children with cancer and 86 adolescents with cancer 20 ; 540 Ugandan participants in observational research on living with HIV 25 ; and 121 potential participants in genetic research, including 60 Seattle members of a health maintenance organization and 61 Yup'ik Alaska Native people. 21 These studies document sample-specific concerns and preferences; broadly, their results converge most conclusively upon the basic finding that study participants would like to receive research results.…”

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confidence: 64%

Health research participants’ preferences for receiving research results

et al. 2016

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Background Participants in health research studies typically express interest in receiving results from the studies in which they participate. However, participants’ preferences and experiences related to receiving results are not well understood. In general, existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. Methods The present study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate results, their satisfaction with results, and when and how they would like to receive research results from future studies. 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5,207 registrants who requested full information about the study, 3,381 respondents completed the survey. Results Approximately 33% of respondents with previous health research participation reported receiving results. Approximately half of respondents with previous research participation reported no opportunity to request results. However, almost all respondents said researchers should always or sometimes offer results to participants. Respondents expressed particular interest in results related to their (or a loved one's) health, as well as information about studies’ purposes and any medical advances based on the results. In general, respondents’ most preferred dissemination methods for results were email and website postings. The least desirable dissemination methods for results included Twitter, conference calls, and text messages. Across all results, we compare the responses of respondents with and without previous research participation experience, and those who have worked in research organizations vs. those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results information included in the survey. Conclusions We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants’ preferences for receiving results. The study’s findings highlight the potential for inconsistency between respondents’ expressed preferences to receive specific types of results via specific methods and researchers’ unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants’ preferences for receiving research results.

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confidence: 64%

Health research participants’ preferences for receiving research results

et al. 2016

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“…Most previous studies of participants' experiences, preferences, and perceptions with respect to the dissemination of research findings show that participants have a high desire to receive findings; however, these studies focused on specific diseases (Dixon-Woods et al 2006; Partridge et al 2005; Fernandez et al 2009; Baylor et al 2013; Trinidad et al 2015). Therefore, it has been difficult to determine participants' general beliefs and preferences for the dissemination of research findings.…”

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confidence: 99%

Qualitative study of participants' perceptions and preferences regarding research dissemination

Purvis

Abraham

Long

et al. 2017

AJOB Empirical Bioethics

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Background The study identifies the experiences, preferences, and perceptions of research participants regarding dissemination of research findings at the participant level and community level. Methods The qualitative study utilized focus-group methodology to explore research participants' experiences and preferences for the dissemination of research findings. Five focus groups were held with 53 participants who were recruited through existing community advisory boards in Arkansas. Results Participants stated that researchers should always offer to share research findings. Participants explained that disseminating findings is appropriate because of their sense of ownership of results, it encourages participation facilitating higher quality research, and it may foster greater trust between researchers and participants. Participants also provided insights on how research findings should be shared, including recommendations for appropriate mode, timing, and context, as well as ways to share sensitive findings and the role of community partners in dissemination. Conclusions This study is consistent with other studies that document participants' desire to receive research findings and expands our knowledge by documenting participants' rationale for why they think it is important and their recommendations for how to share results. Further research is needed to understand why researchers are not disseminating study findings to participants and to test the best ways to share results.

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“…In addition, individual results may be offered results if other conditions are met (National Heart Lung Blood Institute working group et al 2010). Since then, studies have identified support for disclosing personal genomic results from genomic study participants (Allen et al 2014;Bollinger et al 2012;Halverson and Ross 2012;Overby et al 2015;Trinidad et al 2015), researchers (Appelbaum et al 2015;Meacham et al 2010), IRB committee members (Beskow and O'Rourke 2015;Dressler et al 2012), ethicists and lawyers (Burke et al 2014;Evans 2014;Thorogood et al 2014;Wolf et al 2015), and two genomics research networks ). In addition, NHLBI (2010) recommended that Binvestigators conducting research with identifiable communities should engage the community on the return of aggregate and/or individual research results^, and other researchers concurred (Lemke et al 2012;Marsh et al 2013;Overby et al 2015;Trinidad et al 2015).…”

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confidence: 99%

Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach

Culhane‐Pera¹,

Straka

Moua³

et al. 2017

J Community Genet

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Advancing precision medicine relies in part on examining populations that may exhibit unique genetic variants that impact clinical outcomes. Failure to include diverse populations in genomic-based research represents a health disparity. We implemented a community-based participatory research (CBPR) process with the Hmong community in Minnesota, who were refugees from Laos, in order to assess the feasibility of conducting genomic and pharmacogenomicbased research for genetic variants that are relevant to the Hmong community. Our Hmong Genomics Board, consisting of Hmong and non-Hmong professionals, used CBPR principles and built on previous formative research to create and implement culturally and linguistically appropriate informed consent processes for Hmong people at six community venues. The Board chose genetic variants for diabetes risk and warfarin response as relevant to the community. The Institutional Review Board approved aggregate but not individual return of results. Two hundred thirty-seven Hmong participants with mean (range) age of 30.2 (18-81) years and diverse levels of education (22% without and 75% with high-school education) provided saliva for genetic (DNA) analyses. Eighty-five percent of participants agreed to store DNA for future analyses, 82% agreed to share DNA with other researchers, and 78% agreed to be contacted for future studies. Twenty-five elders refused to participate because they wanted individual results. Aggregate results were shared with all participants. This CBPR approach proved highly successful to obtain informed consent and recruit a sample from the Hmong community for a genomic and pharmacogenomic study. Investment in the CBPR process may prove successful to address the gap of genomic information in under-represented communities.

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Community dissemination and genetic research: Moving beyond results reporting

Cited by 34 publications

References 31 publications

Health research participants’ preferences for receiving research results

Health research participants’ preferences for receiving research results

Qualitative study of participants' perceptions and preferences regarding research dissemination

Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach

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