Kindred Study

Surveys, Registries, Interviews
Interviews with African American people who tested positive for a genetic mutation

Study Contact Information:

Dr Katrina Ellis, PI,  [email protected], (734) 615-3487

Dr Feyi Wayas, Study coordinator,  [email protected], (734) 647-6733

About the Study

We are talking with African American adults about cancer genetic testing, including those that have received a positive cancer genetic testing result and people with a family member who received testing. We are learning about new and improved ways to support African American individuals and families before, during and after they participate in cancer genetic testing.

Contact Dr. Katrina Ellis, lead researcher on this study at 734-615-3487 or [email protected] if you are interested in participating.

What the Study Involves

Kindred (HUM00187457) is a 5-year study being conducted at the University of Michigan with the overall objective of increasing communication about genetic testing among African American families and the uptake of recommended testing among family members (cascade testing). We will be talking with African American adults that have received cancer genetic testing and people who have a family member who received testing in online focus groups.

We will conduct focus groups with:

  1. African Americans who were the first in their family to receive cancer genetic testing (Probands) and have positive test results indicating hereditary breast or ovarian cancer (HBOC) or Lynch Syndrome; and, 
  2. family members of African American probands who have been contacted or advised to have genetic testing, and who may/may not have completed the genetic testing themselves (cascade genetic testing).

When individuals express interest in the study, they will be contacted via email, phone call, or letter (depending on preference) regarding steps for enrolling in the study. Individuals will need to complete a short prescreening survey (~10 minutes) to confirm eligibility.

Thereafter, we will be talking with study participants in small discussion groups (focus groups). The groups are separate by role (first person in the family to have genetic testing vs. family member groups) and gender (men vs. women). The groups last for approximately 75-90 minutes.  Participants will also be asked to take a short pre-survey before the group meets to provide basis demographic and health information (~15 minutes). The groups will meet virtually at a convenient time via Zoom; the use of video is optional and you can change your name to protect your privacy.

Each participant will receive a $40 incentive for participating in the pre-survey and focus group.

Lead Researcher and Affiliation

Katrina R. Ellis, PhD, MPH, MSW
Assistant Professor
University of Michigan School of Social Work
1080 S University Ave, Ann Arbor, Michigan, 48109

This Study is Open To:

This Study is Not Open To:


FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.