You can volunteer for Enroll-HD even if you haven’t been tested and don’t know your gene status. Sarah Weber joined Enroll-HD along with her other family members despite not knowing whether she carries the gene, and she’s glad that she did. “For me personally, I think there’s no way we’ll fix the disease unless we have stuff like this happening,” she says.
If you don’t want to find out about your gene status, Enroll-HD keeps all research gene testing results confidential. Your gene status will not be included in your medical records, and even the staff and doctors at your clinic will not know your result. Your gene status is tested anonymously, associated only with a code that can’t be accessed by people at the site. The study needs to include gene-negative people as a comparison group, so whether you have the HD gene or not, your data will be useful, and your confidentiality will be protected. The only difference is that you will not be notified about clinical trials for new drugs or therapies intended to prevent or treat HD.
This story was originally published in the Spring 2015 issue of Enroll!