Table 2 Suicide survivor responses to questions about polygenic risk score testing for suicide.
Theme | Example quotes (edited for brevity) |
|---|---|
Question 1: What does the idea of genetic risk for suicide mean to you? | |
Confusion or skepticism | It’s hard to believe there’s genetic risk for suicide—it’s easier to believe for other health issues. |
Less stigma or more acceptance | More self-compassion, if struggling—risk is something out of your control. |
Better treatment or prevention | Having a genetic risk tells you something that you can do something about now. |
Not useful or informative | For those with generational mental illness, we already know this; they’re aware that they need to address this early. |
Question 2: Would you want to know this information about yourself? Why or why not? | |
Yes: Better treatment or prevention | Want to know as much as I can to be aware and preventative. |
Yes: Less stigma or more acceptance | Want society to be more educated about mental illness. |
No: Unknown effects | Not sure what it would be like to have this in my head. |
No: Psychological adverse effects | If had known this, I would have pulled the trigger—I would have said I’m done. |
Question 2a: Would you want to know this information about your family members? Why or why not? | |
Yes: Better treatment or prevention | Would want to know about my children so I could offer help…to monitor for certain behaviors and have a dialogue about it. |
Yes: Less stigma or more acceptance | In so many religions, suicide is condemned. This is a way to open discussion. |
Depression doesn’t have a visible identity, which can make it more challenging for family members to recognize. | |
Maybe: Uncertain effects | Would it impact decisions about marrying if both partners had mental health challenges? Not sure if would want to pass genetic risk on to children. |
Would like to know and have a test, but it might trigger depression. | |
Question 3: If someone was tested for a suicide genetic risk factor, how would a positive test result impact you and your family? | |
Less stigma or more acceptance | To know this would make me more loving to myself and who I am. |
If people knew that something was a vulnerability, hopefully they wouldn’t hold it against me. | |
Better treatment or prevention | Maybe it would have given me pause before engaging in high risk behaviors. |
Knowing that my child was diagnosed with attention deficit disorder enabled me to advocate for them…. This would be similar. | |
Psychological adverse effects | Would have seen myself as a burden and isolated myself (earlier). |
Not useful or informative | It is what it is. |
Question 3a: How would a negative test result impact you and your family? | |
Not useful or informative | Negative result doesn’t mean you won’t be suicidal. |
It wouldn’t make a difference one way or the other. | |
We should treat everyone as if they are at risk. | |
Useful or informative | Part of me would be relieved, particularly if I had kids. |
Question 4: What do you see as potential benefits of knowing this information? | |
Better treatment or prevention | Increase in funding…. Put more mental health services in schools. |
Getting support earlier. | |
Less stigma or more acceptance | Increase the vocabulary for people to talk about feelings. |
Question 4a: What do you see as potential risks of knowing this information | |
More stigma or discrimination | Discriminated by employers, risk of losing health insurance. |
Neighbors might not let their kids be at my house. | |
Top recommendations | |
• Provide advocacy and support | |
• Figure out why we don’t talk about suicide now | |
• Legitimize mental illness…destigmatize it | |
• Address concerns about privacy and loss of employment | |
• Increase education, all the way…Hope Squad, other peer mentor | |
• This information needs to come from a trained health-care provider, along with resources | |
