A while back Dan Vorhaus and Lawrence Moore wrote a fantastic series of guest posts here on Genetic Future on the issue of what would happen to customer data in the event that a direct-to-consumer genetic testing company went bankrupt - here's the introduction, a detailed analysis of the implications of bankruptcy law, and a summary of the implications for consumers.
Lawrence Moore and Emily Sherlock now have a follow-up post over at Genomics Law Report digging into the implications of federal privacy regulations in the event of a DTC genomics company collapse.
The rather worrying conclusion is that "at present it does not appear that there is any federal regulation--including HIPAA--that clearly restricts the transfer of customers' information as part of a sale of assets by a troubled DTC genomics company." Given that uncertainty, Moore and Sherlock conclude:
...the most practical advice at this time, for existing and potential customers, continues to be to understand the terms and conditions offered by each individual DTC genomics company with respect to their customers' information--and to recognize that, in bankruptcy, genomic data may be transferred to a similar company without regard to those terms and conditions.
There's also a tantalising promise of posts to come in the near future exploring the implications if impending regulatory changes in the DTC genomics area push testing companies firmly into the realm of clinical diagnostics.
Genomics Law Report continues to impress with the quality and diversity of its posts - if you haven't already added it to your RSS reader (and added @genomicslawyer to your Twitter feed) you should go and do so without delay.
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"the most practical advice at this time, for existing and potential customers, continues to be to understand the terms and conditions offered by each individual DTC genomics company with respect to their customers' information--and to recognize that, in bankruptcy, genomic data may be transferred to a similar company without regard to those terms and conditions."
Ummm, does "told ya so" sound professional?
-Steve
This appears to be a general gaping hole in bankruptcy law and not something specific to DTC genomics. Anyone with lawyer credentials could correct me, but I'm under the impression that no privacy agreement is sacred in any bankruptcy event, so any company with whom you have highly private dealings (including traditional medical practices, financial advisors) could be subject to this. Or are there existing specific regulations for medical & legal service providers?