Protecting Member Privacy

Your work with individuals and families whose lives have been touched by genetic diseases naturally will lead you into situations you may not anticipate. For example, you may learn information that the family considers private, such as details of abortions, miscarriages, paternity issues, and other events. It is crucial that you maintain the utmost professional demeanor and treat this information with the respect it deserves - do not share it with anyone, unless you have first obtained permission in writing, and the identifiers have been removed. Make sure you understand the immense trust families have in you as you embark on the journey to integrate some of their personal history within your organization's data collection.

Using Data in Your Publications

If you use data collected from your families in publications, such as articles for professionals or fact sheets for families, be careful to first obtain permission in writing and to strip identifying information from it. Pictures should be altered to conceal the subject's identity, and case descriptions should not contain enough personal information to identify an individual or family. If you are using data from a group, it is most useful to present and discuss the data "in the aggregate" - as a full set of data of which certain questions are asked and information is given for a subgroup rather than individuals ("What proportion had which outcome?"), and from which a reader cannot glean the identities of the subjects.

Using Data with the Media

We discuss conversing with media representatives in our discussion of using publicity, later ("Education of Members, Providers, and the Public"), but the privacy issues deserves focus here as well. Journalists wishing to produce stories about health care reimbursement, genetic services, or other topics - whether related directly to your organization or not - frequently use profiles of individuals as examples in their stories. This can be an important way for your group to gather support, create visibility, and improve the ability of your organization to raise funds and serve members. Be sure, however, that information you give to these outlets is either stripped of identifying information or given with full consent by the individuals or families involved - better yet, with their direct participation. We'll come back to this area in more detail later.

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