Background <p>Israel is advancing large genetic and longitudinal studies in personalized medicine through national digital health initiatives. MIDGAM, the Israeli national biobank established in 2014, provides the core biosample and data infrastructure enabling this research. We investigated the willingness to donate samples and linked clinical data for research purposes, and examined preferences regarding the receipt of research-derived information, including incidental findings.</p> Methods <p>A structured, self-administered questionnaire was distributed electronically to a representative sample of the Israeli population. Participants were asked about their willingness to donate biosamples and linked data, and their opinions regarding receiving results including incidental findings. The data were analyzed by sociodemographic and health characteristics.</p> Results <p>The survey included 1,607 respondents. 52% were willing to donate biosamples, and 40% were also willing to link them with their medical records and to receive incidental results (84.6% of those willing to donate). Individuals most willing to donate and receive research findings, were non-<span>u</span>ltra-Orthodox Jewish, secular, male, aged 30 to 49 years with post-secondary/academic education and above-average income. Additionally, respondents characterized by better general health, being physically active, and absence of chronic or severe illness were more willing to donate biosamples. The main barriers to biosample donation were concerns about data leakage, privacy violations and lack of understanding of the donation purpose.</p> Conclusion <p>Israel’s biosample donation landscape mirrors global patterns, with notable sectorial and demographic disparities. Higher socioeconomic status and health engagement increase willingness to donate, while privacy concerns and the perceived burden of continued involvement reduce participation.</p>

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Willingness to donate biosamples to a national biobank in Israel: a population-based cross-sectional survey

  • Adelina Ovcharenko,
  • Yehudit Cohen,
  • Shimon A. Reisner

摘要

Background

Israel is advancing large genetic and longitudinal studies in personalized medicine through national digital health initiatives. MIDGAM, the Israeli national biobank established in 2014, provides the core biosample and data infrastructure enabling this research. We investigated the willingness to donate samples and linked clinical data for research purposes, and examined preferences regarding the receipt of research-derived information, including incidental findings.

Methods

A structured, self-administered questionnaire was distributed electronically to a representative sample of the Israeli population. Participants were asked about their willingness to donate biosamples and linked data, and their opinions regarding receiving results including incidental findings. The data were analyzed by sociodemographic and health characteristics.

Results

The survey included 1,607 respondents. 52% were willing to donate biosamples, and 40% were also willing to link them with their medical records and to receive incidental results (84.6% of those willing to donate). Individuals most willing to donate and receive research findings, were non-ultra-Orthodox Jewish, secular, male, aged 30 to 49 years with post-secondary/academic education and above-average income. Additionally, respondents characterized by better general health, being physically active, and absence of chronic or severe illness were more willing to donate biosamples. The main barriers to biosample donation were concerns about data leakage, privacy violations and lack of understanding of the donation purpose.

Conclusion

Israel’s biosample donation landscape mirrors global patterns, with notable sectorial and demographic disparities. Higher socioeconomic status and health engagement increase willingness to donate, while privacy concerns and the perceived burden of continued involvement reduce participation.