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The article discusses the relationships between privacy and biobanking laws in the Federal Republic of Germany (Germany) as of 2016, and it mentions the German health and biomedical research systems, as well as the doctrine of informational self determination and judgments issued by the German Constitutional Court. German constitutional rights are assessed, as well as human rights and Germany's parliamentary democracy form of government. Germany's Biobank Act is also examined.

In recent years, the adequacy of the 'gift' model of research participation has been increasingly questioned. This study used focus groups to explore how potential and actual participants of biobanks in the UK and Germany negotiate the relationship between concerns over privacy protection, reciprocity and benefit sharing. In Germany, 15 focus groups (n = 151) were conducted: 11 general public groups (n = 116) and 4 with former cohort study participants including the KORA and the Popgen cohort study (n = 35). In the UK, 9 focus groups (n = 61) were conducted: 4 general public groups (n = 33) and 5 with UK Biobank and European Huntington's Disease (Euro-HD) Registry biorepository participants (n = 28). Forms of reciprocity were found to partially mitigate potential and actual biobank participants' concerns over personal privacy risks and future unintended consequences of biobank in both Germany and the UK. Specifically, notions of individual reciprocity were at the forefront in the context of personal disadvantages to participation, while communal reciprocity was prominent when potential and actual participants were discussing the uncertainty of the long-term nature of biobanking. The research indicates that reciprocity can be viewed as a mode to deal with individuals' concerns about participating in a biobank, both by acting as a return 'favor' or 'gift,' and through establishing an ongoing relationship between participants, researchers and society. It is suggested that future biobanking projects will need to flexibly combine individual and communal forms of reciprocity if they are to recruit and maintain sufficient numbers of participants. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Biobanks are an important tool of genetic epidemiology, which investigates the role of genetic factors and their interaction with environmental factors (in a broad meaning) for the occurrence of diseases in human populations. Its aim is to understand the influence of genetics on the development of diseases, their course and the clinical implications, with the final goal to improve prevention, diagnostics and therapy. The extraordinary development of genetics in the last decades - with respect to the understanding of the meaning of genes for human health, as well as the availability of cost-effective high throughput methods in the lab, has opened enormous opportunities to study genetic factors. In addition, access to large samples of patients or from the population is needed. This can be realized via biobanks. Large biobanks with 500,000 or more participants are being established or planned in the UK, Japan, Australia, Sweden and the US. However, in Germany only two smaller activities are ongoing, KORA-gen in the south and POPGEN in the north. Possibilities to reach larger numbers for Germany, based on existing cohorts or disease networks, are discussed. For the implementation and use of biobanks, stringent ethical boundary conditions have to be taken into account. The opinion of the German National Ethics Council on Biobanks for Research as well as the new recommendations of the Telematic Platform (TMF), which has been developed in close collaboration with the Data Protection Officers, improve transparency and legal security.

In Germany it has rarely been assessed in a systematic way, if and how genetic disposition and genetic testing are linked to health inequality. The paper aims to be a contribution towards closing this gap. In a first step, it is pointed out that the discussion about potential links between genetic causes of social inequalities has concentrated on issues such as body height and intelligence. It is stressed that, of course, social status is mainly determined socially and not genetically. In the second step, medical benefits of genetic testing are discussed. It can be assumed that low status groups are using these tests less often than high status groups, and that they are less capable of interpreting the results. Tests that can have a positive effect on health could thus lead to an increase of health inequalities. However, empirical studies for testing these hypotheses are hardly available. In the third step, the question is raised whether genetic information could lead to social discrimination (e.g. concerning health insurance, life insurance or employer). According to the current empirical literature, to date, this risk is (still) rather small. Thus, it is stressed that more research is needed, and that already today there is some need for intervention (e.g. concerning equal access to genetic testing, better information of low status groups).