This article examines the moralistic language and arguments used in relation to genetics. The focus is on three practices: (1) the claims that there is a duty to know about one’s own genetic makeup, (2) assertions that genetic information should be used to inform reproductive decisions, and (3) the proposition that there are moral reasons to participate in biobank research. With these three, the author contends that there are equally good, if not better, arguments to challenge them from a Millian perspective. Furthermore, especially in the current political climate, there is a need to respect people’s privacy concerns.

In Finland, as well as all over the globe, great weight is put on the possibilities of large data collections and ‘big data’ for generating economic growth, enhancing medical research, and boosting health and wellbeing in totally new ways. This massive data gathering and usage is justified by the moral principle of improving health. The imperative of health thus legitimizes data collection, new infrastructures and innovation policy. It is also supported by the rhetoric of health promotion. New arrangements in health research and innovations in the health sector are justified, as they produce health, while the moral principle of health also obligates individual persons to pursue healthy lifestyles and become healthy citizens. I examine how, in this context of Finnish data-driven medicine, arguments related to privacy and autonomy become silenced when contrasted with the moral principle of health.

GenomeAsia100K is a human genome project based at Nanyang Technological University in Singapore that aims to sequence one hundred thousand Asian genomes in an effort that addresses an ethnic bias towards Western populations in previous genomic research. GenomeAsia100K consists of a team of bioinformaticians, statisticians and population geneticists, and was initiated by the Nanyang Technological University in collaboration with industrial partners MedGenome (an Indian R&D company specializing in genomic data), the California Biotech company Genentech, and Macrogen, a genome sequencing company from Korea. The GenomeAsia100K project is amongst the most ambitious precision medicine projects to date but it is not clear how the project will challenge or reshape understandings of ethnic and racial differences in Asian populations. Ian McGonigle, a scientist and cultural anthropologist, sat down with geneticist Stephan C. Schuster, the scientific chairman of GenomeAsia100K, to discuss the project and the implications of genomics for social identity in the 21st century.

The question of informed consent has been central to public and scholarly debates on research biobanking, as well as to regulatory efforts. We discuss why this concept has gained such a central position and argue that it has less to do with its adequacy as a regulatory tool than with its capacity as a deflecting concept, shifting the focus away from more serious, but at the same time less governable issues. While its main value for medical science lies in its function as a signifier of ‘normal’ and responsible scientific conduct, in politics it functions as an ‘emergency exit’, a way to remove fundamental problems from the public and political field without having to solve the unsolvable. The individualizing gaze of informed consent overshadows questions of a predominantly collective nature, such as possible broader socio-cultural changes brought about by biobank-based research. However, the notion of genetic solidarity or altruism, which has been offered as an alternative framework to informed consent, does not open up the space for political and public debate on the objectives and consequences of research biobanks, but rather puts a further lid on such debate, through defining medical research as an unconditional good in its own right.

It is widely recognized that traditional informed consent requirements are highly problematic in the context of population-based genetic research. This article is based on a qualitative study that describes and analyses the consenting procedures and perceptions of donors to the North Cumbria Community Genetics Project (NCCGP), a DNA bank in northwest England. The NCCGP collected placenta and cord tissue, as well as maternal blood samples and health and lifestyle information, in order to conduct genetic epidemiological studies. The findings show that the nature of the sample (i.e. afterbirth) significantly impacted donors’ decision to donate. The antenatal context also influenced the way the request was framed to potential donors, who had a limited understanding of the aims of the biobank. However, the article concludes that a lack of understanding on the part of donors is not necessarily an ethical problem and that efforts to re-think informed consent guidelines may benefit from paying greater attention to the factors that motivate people to donate in the first place.

As part of its work on setting standards and establishing guidelines for nutrigenomics research, the European Nutrigenomics Organisation (NuGO) is developing bioethical guidelines for those engaged in human nutrigenomics studies. A NuGO working group developed a set of draft guidelines addressing four areas: (1) information and consenting prior to a nutrigenomicsstudy; (2) the generation and use of genotype information; (3) the establishment and maintenance of biobanks; (4) the exchange of samples and data. NuGO convened a workshop with a panel of invited external experts to assess the draft guidelines. The panel of experts confirmedthat these areas are important and that the development of specific bioethical guidelines for nutrigenomics research would therefore enhance the application of established international guidelines in this field of biomedical research.