Protecting Member Privacy
Your work with individuals and families whose lives have been touched by genetic conditions 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 individual'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 of people, it is most useful to present and discuss the data "in the aggregate". This means presenting the information as a full set of data of which certain questions are asked and information is given for a subgroup rather than specific individuals ("what proportion had which outcome?"), and from which a reader cannot glean the identities of the participants.
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 deserve focus here as well. Journalists producing 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 organization 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.
- Autopsies and Tissue Collection
- Best Practices
- Conferences, Workshops, and Meetings for Affected Individuals
- Connecting Individuals
- Dealing with Death
- Internet Services
- Phone Services
- Protecting Message Boards from Spam
- Setting Up A National Conference
- Support for Individuals and Families
- Youth to Adult Transition Issues