Table 2.

CHARM Participation and Incompletion Survey Responses

	Number of closed-ended responses (%)	Representative Open-ended Response
Motivations (up to 3 could be selected)
I want to know my future risk for cancer	664 (81%)	“It would be beneficial for me to know what potential problems I am likely to encounter. With this knowledge I can potentially take any known preemptive measures, or be better prepared mentally (not blindsided) if a health condition such as cancer occurs.” “To learn more about my health and potential risk factors.”
I want information that may help my family	476 (58%)	“To help the research study and learn more about genetic testing and risks to myself and children” “Improved Health Outcomes for myself and family based on information to inform healthily living options.”
Knowing my risk for genetic conditions may change how I take care of myself (e.g., diet and exercise)	384 (47%)	“I believe it give me a good sense of knowledge if the results come back stating i have a possibility of getting cancer. It will also allow me to look into how to treat certain cancers early on.” “I think is very useful to be able to take preventive action if you find out you are prone to a certain type of cancer.”
I want to advance research	280 (34%)	“My best friend was recently diagnosed with thyroid cancer and had her thyroid removed. I’m scared for how young we are. She is now in recovery. I have lost both grandfathers and a first cousin to cancer as well. I want to be as prepared as possible for any health issues that may occur. I want to be able to help other people through early detection like my best friend just experienced. It saved her life.” “I understand how important research is in general with contributing to knowledge, advancements in medicine, etc. I also feel strongly about preventive care and it seems this research may contribute to that cause.”
Knowing my risk for genetic conditions may change my healthcare	236 (29%)	“To learn about the chance of getting cancer or any other health problem in the near future.” “Interested in learning more about my genetics and what cancers I’m prone to. This will help inform preventative health care measures.”
I like to use the most up-to-date technology	107 (13%)	“I’m interested in knowing health info, and genetic tests fascinate me.” “Curious about my medical chances of cancer and free dna test.”
My doctor encouraged me to join	32 (4%)	“I was curious as to having genetic testing due to cancer history in my family. My physician referred me to this study and I was very interested.” “Suggested by PCP that I may qualify based on family history and I am interested in learning everything the study can show. I am fascinated by genetics in medicine.”
My family encouraged me to join	20 (2%)	“My sister, who is 31, was just diagnosed with breast cancer and tested positive for BRAC1 [sic]. My grandma on my father’s side died of breast cancer when she was 31. We were told to all get tested as a result of this.” “Wife recommended it because my mother had cancer.”
Concerns
I do not have any concerns	278 (40%)	“I don’t really have any concerns about joining this study.”
I am worried that my genetic test result may be used against me (e.g., by an employer, health insurance company, etc.)	249 (31%)	“I also have some concerns that this will make it hard to get life insurance if the results are abnormal.”
I am worried about how I will cope with the genetic information I will receive	212 (26%)	“That my anxiety it’s going to be out of control.”
I have concerns about my privacy	198 (24%)	“Having this information used against me in some way.” “I’m concerned about having genetic information in a study database, but I am satisfied with how the information is being protected in this case.”
It may be hard for me to do the things the study is asking me to do	64 (8%)	“I’m not sure the length of time of the research and how long I would need to participate. I’m currently not on any medications except for a b6 supplement. I don’t like taking medications and don’t know if taking medications will be part of the study.” “I have some mild logistical concerns. I live about an hour from my nearest [hospital system] facility and I have a very full schedule. Time commitment is tricky for me.”
I have concerns about participating in research	34 (4%)	“What people do with my information and genes.” “I’m concerned I might find information that is harmful to my health. And that the information may not be accurate.” “There seems to be an open ended use of my results for other research studies and it doesn’t seem like there’s any way of requiring consent for this.” “Having my data collected and stored. I’m somewhat concerned about results indicating I may be developing cancer or another health condition.”
Reasons for Declining
I have concerns about my privacy	30 (38%)	“Because I do not want to be discriminated against by insurance companies now or in the future based on these results. I realize that currently our laws do not support denying health insurance based on preexisting conditions but there is no guarantee that this will not change in the future. It is too risky to have the results of this test in a persons [sic] medical record.”
The things I needed to do to be in the study didn’t work well for me	15 (19%)	“I am very limited on personal time and worry that it would be too much of a commitment.” “I had a death in the family, then a huge family vacation, new job, and moved to a new house over the last 3 months. I just couldn’t get it together to complete the study.”
I’m worried about how I will cope with the genetic information I might receive	15 (19%)	“Scared to find out results.” “I’m scared of knowing too much about my health because I don’t want to feel paranoid all the time.”
I am not interested in participating in research	12 (15%)	“It was not something I was interested in at this time.”
My current health condition is all I want to focus on right now	11 (14%)	“I am on a lot of medication already.”
I don’t want genetic research results from this study	11 (14%)	“I decided I don’t want to know.”