Advising a Genetic Testing or Genomics Business: A Practitioner's Guide to Consent Architecture, Research Use, Database Licensing, and Law Enforcement Requests
By Casey Scott McKay ·
A working guide to acting for consumer genomics companies, clinical testing laboratories, biobanks, and the partners who license their databases. It opens with the intake and the consent-generation problem that shapes every subsequent question. It then works through consent architecture, sample and data retention, the regulatory classification that determines the compliance posture, research and database licensing, law enforcement policy, discrimination and disclosure obligations, security, and incidental findings. It closes with three worked engagements and a note on advising honestly in a field where the affected parties are not the clients.
IP and Technology > Privacy Data Security | Guide | Published 12 March 2024 - Updated 14 October 2024 | Casey Scott McKay - marksy.us
The engagement, and what makes it unusual
You are acting for a company that holds the most identifying data a person has, that it obtained from them voluntarily, and that describes people who never dealt with it at all.
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