3 modes of sharing genetic information
In order to understand the risks of obtaining and sharing personal genetic information, a few words are in order about the different types of sharing that are possible.
In general, there are three modes for sharing genetic information.
1) No disclosure
This might be referred to as the cupboard drawer strategy. A person gets sequenced, their data is shipped to them on a DVD, and they stick this DVD in the cupboard drawer. Data is kept private and not shared at all. Not very useful.
Conceivably, one day there might be software available for home computers, for those who are paranoid about sharing their genetic data but still seek knowledge that may be gained from genomic interpretation.
2) Controlled disclosure
Medicine, recreation, and the advancement of science are all reasons for sharing personal genetic information. Giving access permissions to specific individuals or groups of individuals, including organizations, is called controlled disclosure. Individuals with access permission will be responsible for being good data stewards.
Examples of data stewards might be:
- health care professionals
- service providers, e.g. medical consultants, genealogy, insurers, etc.
- scientists and researchers
- law enforcement
- family members
3) Uncontrolled disclosure
This category of information describes the situation that personal genetic data is made publicly available, by publishing on a website for example. To be clear, publishing a personal genome sequence on a public website may be a conscious act, and is controlled in that way, but once the data is in a public forum where anyone has access, disclosure itself becomes more or less uncontrolled.
Uncontrolled disclosure also describes any situation where access is gained by individuals without explicit permission, through hacking or the carelessness of a data steward for example.
This month I am doing an extended meditation about the risks of obtaining and sharing personal genome sequences. This exercise will be cathartic for me. Beyond that, I hope it may help to reorient the conversation about risks into something that one day might resemble practical guidance for individuals considering obtaining and sharing personal genetic information.