Educating Your Membership about Research

Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and participate in studies. In addition, funding agencies make monies available for "studies" or projects that have social or community focuses. Research is an important area of concern, and your organization will need to have—and provide—information about it.

Helping Members Decide Whether to Participate

Your members may be eager to participate in research. They may have heard about genes being identified for your condition or other conditions and wish to be tested themselves. They may also be fearful about participation, concerned that genetic testing might cause them to be denied a job or health insurance in the future.

They are right to be concerned. Although there are active policymaking efforts to protect the privacy of genetic information in a meaningful way, there is still a long way to go. You can be an important source of information for your members to help them evaluate various studies and help them understand not only the potential benefit to them and their family members, but also the essential safeguards for their heath information.

Any study that seeks to enroll individuals must provide several protections:

• A robust informed decision-making process and the resulting documentation
• Protection of identifiable personal and health information
• Provision for disposal of samples or information at the termination of the study
• The opportunity to withdraw from or chose to not participate in the study without negative effects on health care or future treatment opportunities

The organization can be the source of information on the various ongoing research studies of your condition—the purpose of the study, the principal investigator (PI), contact information and what is required of participants.

Internal Links

• Barriers to Rare Disease Research
• Benefits of Collaboration with Advocacy Organization Community
• Blood and Tissue Banks
  • Genetic Alliance BioBank
• Consumers and Researchers
• Facilitating Quality Research
• Funding Research by Others
• Getting Needs onto the Research Agenda
• Genetic Privacy
• Orphan Drug Application
• Patient's Bill of Rights
• Promoting Research
• Registries
• Research Models
  • Research Model 1: Recessive Disorder
  • Research Model 2: Chromosomal Disorder
  • Research Model 3: Dominant Disorder