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Ethical concerns regarding Danish genetic research

Molecular Psychiatry volume 24, pages 1572–1573 (2019)Cite this article

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While technically impressive, the study presented in “The iPSYCH2012 case–cohort sample: new directions for unraveling genetic and environmental architectures of severe mental disorders” by Pedersen CB et al. [1], raises ethical concern. In 2012, ~50,000 patients born between 1981 and 2005, and diagnosed with disorders such as ADHD, schizophrenia, mood disorders, and bipolar affective disorder, along with an additional random sample of 30,000 individuals, were identified using Danish population-based registers. Subsequently, dried blood spots from nearly all 80,000 individuals were retrieved from the Danish Neonatal Screening Biobank and processed for genotyping. All 80,000 were genotyped using an array-based assay, while 20,000 were exome-sequenced. For each subject, longitudinal information on health, prescribed medicine, and socioeconomic information was made available, as was analogous information on relatives. The data concerning iPSYCH2012 are pseudonymized (http://ipsych.au.dk/about-ipsych/data-processing-and-data-security-at-ipsych/). The re-identification key for coupling the Danish civil registration number (CPR) and pseudonym identifiers is stored separately from genetic profiles.

None of the 80,000 individuals included in the study provided their consent to participate in iPSYCH2012, nor were they even informed about the fact that their personal data and genetic footprints were included in the study. Once registered in the genetic profile database, subjects had no right to deregister. Furthermore, if citizens with psychiatric diagnoses who may have been genotyped and profiled seek transparency regarding own data, they are denied any right to know whether they have been included.

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References

  1. Pedersen CB, Bybjerg-Grauholm J, Pedersen MG, Grove J, Agerbo E, Bækvad-Hansen M, et al. The iPSYCH2012 case–cohort sample: new directions for unravelling genetic and environmental architectures of severe mental disorders. Mol Psychiatry. 2018;23:6–14.

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  2. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27April 2016. On the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data ProtectionRegulation). https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32016R0679&from=EN.

  3. United States Court of Appeals, Second Circuit 30 Jan, 2009562 F.3d 163 (2d Cir. 2009) 03/13/2018; 08/20/2018 Accessed on date 20th of september 2017. https://caselaw.findlaw.com/us-2nd-circuit/1442878.html.

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Authors and Affiliations

  1. Ishøjcentrets Læger, Ishøj Store Torv 22, 2. Sal, 2635, Ishøj, Denmark

    Thomas Birk Kristiansen

  2. Danish College of General Practitioners (DSAM), Stockholmsgade 55, 2100, København Ø, Denmark

    Anders Beich

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  1. Thomas Birk Kristiansen
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  2. Anders Beich
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Correspondence to Thomas Birk Kristiansen.

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Kristiansen, T.B., Beich, A. Ethical concerns regarding Danish genetic research. Mol Psychiatry 24, 1572–1573 (2019). https://doi.org/10.1038/s41380-018-0257-4

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