Dataset Information

Young adults' attitudes to sharing whole-genome sequencing information: a university-based survey.

ABSTRACT: BACKGROUND:Genomic services are increasingly accessible to young adults starting their independent lives with responsibility for their self-care, yet their attitudes to sharing genomic information remain under-researched. This study explored attitudes of university-based 18-25?year-olds towards sharing personal whole-genome sequencing (WGS) information with relatives. METHODS:We surveyed 112 young adults. Hypotheses were tested regarding the relationships between their preferences for sharing personal WGS information with relatives and factors including their gender, previous genetics-specific education, general educational attainment level and current study in a science, technology, engineering, maths or medicine (STEMM) field. RESULTS:Most participants were positive about both their intention to share their WGS results with their parents and siblings, and their desire to know their relatives' results. Being female and having a university-level genetics education were consistently positively correlated with intention to share one's results with parents and with siblings as well as the desire to know relatives' results. Additionally, females who had undertaken a genetics course at university had significantly greater intentions and desires than females who had not. Lower general educational attainment was related to a lower intention to share with siblings. Participants who were in a STEMM field had a greater desire to know their relatives' results. CONCLUSIONS:Participants' gender and prior genetics education were consistently related to their intentions to share WGS results with relatives and their desire to know relatives' results. Educational attainment was found to be positively correlated with intention to share with siblings. Being in a STEMM field was related to participants' desire to know their relatives' results. These findings indicate that gender and genetics education are particularly important influencers on young adults' stated sharing preferences. More research is required to examine the dependent variables studied to further understand their influence on attitudes to sharing WGS results. These findings are particularly interesting for information provision and support before genomic sequencing and post-results to improve the outcomes for individuals and their relatives.

SUBMITTER: Barnard P

PROVIDER: S-EPMC6469029 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Young adults' attitudes to sharing whole-genome sequencing information: a university-based survey.

Barnard Pepita P Sharples Sarah S Thomson Brian J BJ Garibaldi Jonathan M JM

BMC medical genomics 20190416 1

<h4>Background</h4>Genomic services are increasingly accessible to young adults starting their independent lives with responsibility for their self-care, yet their attitudes to sharing genomic information remain under-researched. This study explored attitudes of university-based 18-25 year-olds towards sharing personal whole-genome sequencing (WGS) information with relatives.<h4>Methods</h4>We surveyed 112 young adults. Hypotheses were tested regarding the relationships between their preferences ...[more]

PMID: 30991996

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Project description:BackgroundThe use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices.ObjectiveThis study aims to explore public attitudes in Australia toward sharing government health data with the private sector.MethodsA web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019.ResultsThe survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population.ConclusionsThis nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

Project description:BackgroundCOVID-19 is an international health crisis of particular concern in the United States, which saw surges of infections with the lifting of lockdowns and relaxed social distancing. Young adults have proven to be a critical factor for COVID-19 transmission and are an important target of the efforts to contain the pandemic. Scalable digital public health technologies could be deployed to reduce COVID-19 transmission, but their use depends on the willingness of young adults to participate in surveillance.ObjectiveThe aim of this study is to determine the attitudes of young adults regarding COVID-19 digital surveillance, including which aspects they would accept and which they would not, as well as to determine factors that may be associated with their willingness to participate in digital surveillance.MethodsWe conducted an anonymous online survey of young adults aged 18-24 years throughout the United States in June 2020. The questionnaire contained predominantly closed-ended response options with one open-ended question. Descriptive statistics were applied to the data.ResultsOf 513 young adult respondents, 383 (74.7%) agreed that COVID-19 represents a public health crisis. However, only 231 (45.1%) agreed to actively share their COVID-19 status or symptoms for monitoring and only 171 (33.4%) reported a willingness to allow access to their cell phone for passive location tracking or contact tracing.ConclusionsDespite largely agreeing that COVID-19 represents a serious public health risk, the majority of young adults sampled were reluctant to participate in digital monitoring to manage the pandemic. This was true for both commonly used methods of public health surveillance (such as contact tracing) and novel methods designed to facilitate a return to normal (such as frequent symptom checking through digital apps). This is a potential obstacle to ongoing containment measures (many of which rely on widespread surveillance) and may reflect a need for greater education on the benefits of public health digital surveillance for young adults.

Dataset Information

Young adults' attitudes to sharing whole-genome sequencing information: a university-based survey.

Publications

Young adults' attitudes to sharing whole-genome sequencing information: a university-based survey.

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