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.
