WP leader: Scientific Institute of Public Health, Belgium (Marc Van den Bulcke)
Citizens' conceptions of the genome
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The development of large data sets, including genomic data, coupled with rapid advances in personalized medicine where citizens increasingly face complex choices about the use of their genomic information implies that citizens are essential stakeholders in genomics. They should be engaged in the ethical, legal and societal issues to produce a framework that fosters trust and allows them to guide the technology based on their values. This article highlights that citizens' conceptions of the human genome inform about and make sense of their main values regarding the use of genomic information, which is critical for policymakers, experts and stakeholders to understand to maintain the public support in genomics.
Through an inductive thematic approach, we reanalysed data collected for the Belgian citizen forum, which aimed to produce recommendations for the Ministry of Public Health and other stakeholders. Citizens expressed four conceptions of the genome that determined which uses of genomic information they supported: the most intimate part of individuals; ‘I am more than my genome’; the individual's property vs the common good; and uncertainty and fear.
Diversity in their conceptions reveals remaining conflicts of values among citizens, mainly regarding a conception of the genome as an individual property or a common good. However, despite differing conceptions, shared values emerged such as solidarity, privacy, no genetic discrimination and the right to an open future, where individual and common interests coexist.
The Belgian DNA Debate
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Genomics is increasingly being implemented in society. To fully realise this implementation, citizens should be consulted about their perspectives on genomics and its associated ethical, legal and social issues (ELSI), to enable them to co-create with experts a society-supported framework in genomics.
A Belgian online DNA debate was organised, where 1127 citizens contributed to its deliberative platform. Contributors expressed a dual attitude towards the societal use of genomic information throughout five main themes. Firstly, contributors considered DNA to have a significant but non-deterministic impact on identity. The second theme describes how genomic information may guide people’s behaviour, but have unfavourable effects such as psychological distress. The third theme covers the tension between a genomics-based responsibility and the rejection of genetic discrimination. The fourth theme depicts how genomic information may be useful for the common good and society at large but how, nevertheless, it should be people’s free choice to use this information. In the fifth theme, contributors expressed both a willingness to share their data and a caution towards the harm and abuses this may engender. Finally, contributors formulated some recommendations for the responsible implementation of genomics.
The attitude of contributors towards the societal use of genomic information and its ELSI aligns with a soft precautionary approach, in which prudence and the weighing of different values should result in protective measures against potential risks and harms. Further societal implementation of genomics should include these values and concerns.
A genetic passport for all? Qualitative analysis of the Belgian online DNA debate
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Confronted with the idea of a genetic passport for all citizens, participants from the online Belgian DNA debate expressed several central values, related concerns and motivations, but most importantly, a sense of vulnerability. Policymakers, experts and stakeholders in genomics should consider citizens’ vulnerabilities to maintain the public trust and support in genomics.
WP6 description and objectives
Cancer control is a major public health issue. The pathology is strongly driven by genetic modifications in the genome DNA. A new era in science has emerge in the last decade, the so-called ‘genomics’ study field wherein we try to better understand health through integrating broad information on the genome with data on the impact of environmental factors such as nutrition, physical fitness but also disease. When studied at population scale this branch is generally designated as ‘Public health genomics’ (PHG).1 In addition, ‘public health genomics’ or ‘precision health’ is to be mirrored to the medical use of genomic information in personalized medicines, both fields being intimately intertwined through the very common denominator, the genome. Healthcare around the world is at a crossroads, with financial pressures undermining the sustainability of healthcare systems. It requires a shift from treatment of established disease to early diagnosis and disease prevention and relies on the need to engage citizens to take greater responsibility for their health in order to establish a more participatory healthcare model.
However, claims and counterclaims about the role that genomics might play in improving population health and patient care have been raised. On the one hand, genomics is viewed as the harbinger of a brave new world in which health care is transformed by virtue of earlier diagnosis, more effective prevention programs and more precise targeting of therapies to ever more narrowly specified diseases. On the other hand, genomic medicine is seen as promoting a vision of health care that encourages individualism rather than collectivism, creates the risk of further fragmenting the risk pooling that underpins social solidarity, and increases the scope for stigmatization and discrimination. Amid these competing visions of the advances that genomic science might entail, there is a critical need for an appropriate policy response.
Here, we wish to develop practical guidance for member states on four important aspects in successful integrating genomics in the health care system:
- As it is imperative that the population is actively supporting this paradigm shift in healthcare, a societal debate on ethical, legal and privacy issues on the use of genome information in healthcare is needed
- While considered as a promising future development, stratified screening by genetic testing of high-risk cancer patients requires evidence-based decisions and strict regulation of any enrolled initiative
- Implementing precision genomics in medical care may have profound impact on health professionals work experience, on data registration management systems and national healthcare budgets if not introduced in a carefully planned stepwise approach,
- It is necessary to jointly develop a strategy how to deal with ‘Direct to Consumer’ testing within the healthcare system
- Education and training on genomics of health professionals, policy makers and the citizens is a key element to full success of this new paradigm in healthcare