Table 4:
Qualitative themes and example quotes
| Would your willingness to participate in the study change if you had been provided the following language? | ||
| Theme | Consent | Example quotes |
| Discrimination | Received more information about gaps in second Consent scenario | • “My information would be much more exposed with the new language.” • “I may not be able to get other types of insurance. Or types of loans.” • “Because it says I'm not protected.” • “It would allow wholesale discrimination.” • “Long term care could be important, why chance an insurance company discriminating against me?” • “It adds the information that would lead me to believe it could put me at a risk in other areas that may affect my life negatively.” |
| Received less information in second Consent scenario | • “Willingness would increase because sentences detailing exclusions were omitted.” • “It removed the discrimination against life insurance” • “eliminated my cause for concern” |
|
| Please explain your answer to: based on the informed consent language, do you believe you are at risk of genetic discrimination? | ||
| Theme | Likert* | Example quotes |
| Family History/ Personal history of disease | Lower perceived risk | • “I do not have any genetic disorders that would make me susceptible to discrimination.” • “Not many diseases run in my family.” • “I don’t think that my genetics will show any abnormalities to increase my risk of developing any kind of disease.” |
| Higher perceived risk | • “Mother had Alzheimer’s.” • “There is a high number of cancer and diabetic deaths in my family.” • “I do not want a lot of my genetic information getting around as I have a history of diabetes, familial lipidemia, and heart disease in my family. If that gets out to potential employers, I will not get hired.” |
|
| Employment & insurance status | Lower perceived risk | • “I work for a large company. I already have health insurance. I am comfortable with my role in the company and know I will retire from there. I have enough investments to cover an unforeseen disability or if I need long term care.” • “I am retired and have Medicare. I don’t think the results of a test should affect my healthcare. If so, we are all in trouble.” • “I am not employed or seeking any additional insurance.” |
| Higher perceived risk | • “I work for a company with only five employees so the laws would not protect me.” • “GINA only applies to firms above 15 employees. If I work for a small company and the information is captured, it can leak to other public databases and be swept up into my online data persona.” |
|
| Race/racial appearance | Lower perceived risk | • “I'm white in appearance.” • “My descendants originated in Spain and Portugal. I'm very light skinned and have never been discriminated against ever.” • “I’m not at risk because I am not a minority.” |
| Higher perceived risk | • “I’m black.” • “Because of my race and economic background.” • “I believe anyone who isn’t white is at risk.” • “I believe that black people would be targeted.” |
|
| Trust in laws and protections | Lower perceived risk | • “Because they cannot discriminate against me if they have 15 or more employees.” • “No, I think GINA is good enough to protect me from genetic discrimination.” • “I feel safe that my information will not be made available to anyone else.” |
| Higher perceived risk | • “If this information is available to insurance companies, a person can be denied life insurance, health care insurance and long term health care insurance.” • “Because life insurance, lenders and others can discriminate if they find something about my health.” • “Nothing is confidential anymore.” • “I do not trust insurance companies to treat me fairly based upon projections of conditions which I MAY or may NOT acquire, no matter the probability. Money rules all.” |
|
Note: “Lower perceived risk” were responses of 1–3, “higher perceived risk” were responses of 5–7.
*
Scale anchors of Not at all at risk (1) and At high risk (7)