Direct-to-consumer genetic testing: "...companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces." #WhyPathologistsMatter

Per Med. 2017 May;14(3):249-257. doi: 10.2217/pme-2017-0001. Epub 2017 May 11.

Direct-to-consumer genetic testing: where and how does genetic counseling fit?

Middleton A1, Mendes Á2, Benjamin CM3,4, Howard HC5.

Author information

1

Society & Ethics Research Group, Connecting Science, Wellcome, Genome Campus, Cambridge, UK.

2

UnIGENe & Centre for Predictive & Preventive Genetics (CGPP), IBMC - Institute for Molecular & Cell Biology, i3S - Instituto de Investigação e Inovação em  Saúde, Universidade do Porto, Portugal.

3

School of Community Health & Midwifery, University of Central Lancashire, Preston, UK.

4

Liverpool Women's NHS Hospital Trust, Liverpool, UK.

5

Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden.

Abstract

Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to 'research' results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being 'direct-to-consumer' much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces.