|Source: CDC's Genomics and Health Impact Blog|
The clinical utility of the testing, from the early days, has been an issue. Early adopters of personal genomics, so-called ‘early spitters’, were driven by curiosity and perhaps even ‘informational exhibitionism.’
The authors have two main concerns around current oversight of genomic testing.
- Whose DNA is being tested?
- Who has access to the information?
- A politician sending in a DNA sample from a rival and ‘leaking’ information about his/her genetic proclivities
- A defense attorney presenting genetic information on a crime victim
- A prospective mother secretly testing the genes of several partners for a desired characteristic for her child
The authors make the following urgent recommendations:
- Providers should self-regulate by forming a possible “Association of Personal Genome Service Providers” and should develop “Best Practices.”
- Providers should clearly warn consumers that the DNA of another person cannot be submitted for testing without permission.
- Customers should sign a statement saying that the DNA sample submitted is their own or that of someone in their legal custody.
- “Providers should define themselves as ‘trustees’ of genetic information i.e. the information is held in trust for the benefit of another” and carries a fiduciary responsibility to that party.
- Personal genomics units should be added to the European Medicine Agency (EMEA), the European Union and the Food and Drug Administration (FDA) of the United States.
- Legislation clarifying ownership of personal genetic information should be instituted.