دانلود رایگان مقاله نگرش نسبت به ژنومیک شخصی در میان بزرگسالان قدیمی سوئیس

abstract

Objectives: To explore attitudes of Swiss older adults towards personal genomics (PG). Methods: Using an anonymized voluntary paper-and-pencil survey, data were collected from 151 men and women aged 60–89 years attending the Seniorenuniversität Zurich, Switzerland (Seniors' University). Analyses were conducted using descriptive and inferential statistics. Results: One third of the respondents were aware of PG, and more than half indicated interest in undergoing PG testing. The primary motivation provided was respondents' interest in finding out about their own disease risk, followed by willingness to contribute to scientific research. Forty-four percent were not interested in undergoing testing because results might be worrisome, or due to concerns about the validity of the results. Only a minority of respondents mentioned privacy-related concerns. Further, 66% were interested in undergoing clinic-based PG motivated by the opportunity to contribute to scientific research (78%) and 75% of all study participants indicated strong preferences to donate genomic data to public research institutions. Conclusion: This study indicates a relatively positive overall attitude towards personal genomic testing among older Swiss adults, a group not typically represented in surveys about personal genomics. Genomic data of older adults can be highly relevant to late life health and maintenance of quality of life. In addition they can be an invaluable source for better understanding of longevity, health and disease. Understanding the attitudes of this population towards genomic analyses, although important, remains under-examined.

4.5. Outlook and conclusion

How to harness people's willingness to engage with their genomic data and contribute to research, while making sure they are not exploited and their individual rights are not being violated, remains a key challenge. As PG is a relatively new development we are only at the beginning of the debate about necessary measures, for example, at the regulatory level; how to engage the broader public in the debate; and ultimately how to protect individual rights, like privacy and confi- dentiality, while avoiding undue paternalism. Although these are global developments, policies tend to be developed and implemented at the national level and therefore they need to be responsive to different public perceptions about genomics, public trust in scientific and medical research, the health care systems, as well as different regulatory regimes. This exploratory study shows that older Western European adults of higher educational level and with familiarity with online technologies are generally interested in personal genomics. The participants were motivated by the possibility to participate in research and interest in one's actual and future health. This population is of particular importance for genomic studies. Genomic data from this population can contribute to better understanding of longevity, gene–environment interactions and wellbeing. In addition, as this segment of the population is rapidly growing, more thought should be given on how to involve this group in genomic research. If that were to be the case, it is imperative to understand the attitudes, preferences and concerns of this population group in relation to genomic data. Such an understanding is crucial for developing appropriate policies and practices in relation to recruitment, informed consent and privacy-setting options relevant to personal genomics. We hope that our exploratory findings will help set a broader research agenda for genomics and senior adults.