Biobank research and the welfare state project: the HUNT story

Abstract

Health surveys and biobank research projects involve large groups of people, in the role of participants as well as potential beneficiaries. In this article, the nature of biobank participation in ambitious welfare states is explored by a description and an analysis of the Norwegian HUNT project. The analysis of HUNT material brings forth a transformation of the ethical side of partaking. Different approaches to the overall aim of emancipation of the individual through and from the state – paternalism and autonomy going hand in hand – are spelt out in the three recruitment policies of HUNT 1–3. In this article, I aim to show how the HUNT participant is conceptualised in different ways in the three rounds of recruitment, and how these conceptualisations illustrate essential features of the welfare state project in a period of transition.

Keywords:

• HUNT
• welfare states
• saturated societies
• biobank participation

Notes

1. HUNT is an acronym for Helseundersøkelsen i Nord-Trøndelag, which translates into The North Trøndelag Health Study.

2. Examples of papers using HUNT data include Rivenes et al. (2009) and Bjelland et al. (2008).

3. The policy of normative recruitment is a double-edged sword. For a public institution to go out and say that people should take part in a project both for their own and the common good, could boost participation rates. This policy could, however, seriously backfire, if the public do not find that the project in question really promotes these goods in an important way. A dramatic loss of good-will, trust and eventually participants might then be the consequence of a normative recruitment policy. Rather than just being an easy way to increase the number of participants, this kind of policy actually increases the demands on the public institution to make sure that the nature of the project really fulfils the criteria for advancing the common good and makes the normative recruitment legitimate.

4. If we take a look at the participation rates of different age groups for HUNT 3, Krokstad's hypothesis gains some strength. For males, the participation rate for the age group 20–29 is 25.1%. This is 42 percentage points lower than the male age group 70–79, and only 4 percentage points lower than the male age group of 90+! Neither promotion of medical research nor the need for a personal health check provides the necessary motivation for more than one-fourth of young men to take part in HUNT 3. This might be because of their lack of health concerns as opposed to other age groups, and because they belong to a generation with opposing views on the importance of taking part in health research than previous generations (Antonsen 2005). These two characteristics might be the two most important reasons for the overall decline in motivation to take part in HUNT. If that is the case, the low attendance rate of the male age group 20–29 just shows the effects of these characteristics in a purified form.