Table 2.

Themes: patient and family preferences for direct contact programs.

Theme	Exemplar Quote
The potential health benefits to relatives is the main rationale for direct contact programs.	There might be a small percentage who may be feeling like I verbalized, that they don’t want to—they don’t even want to carry the burden of knowing that there is a possibility of something. But for a huge portion of the population, I would think, they would just want to know. And then they can go talk to their private provider and then go on from there. I would want to know. I would want to know. Regardless of the feelings I may have, ultimately after I calm down, I would want to know if I had a greater risk of dying like my sister did at 41. (relative)
Participants were supportive of direct contact, but aspects of direct contact programs were new and raised concerns about whose duty it is to notify relatives and about how privacy would be maintained.	SPEAKER 1: Something that came to my mind was the ethical situation. Where the doctor knows that someone is at high risk, I mean, shouldn’t they contact somebody? …It’s not protecting Molly’s privacy. It’s protecting Irene’s or Conrad’s or Tina’s or whosever privacy. 1 …It’s a tradeoff, the privacy versus the health—the lifesaving information. That’s what it amounts to, doesn’t it? (SPEAKER 2): But I—maybe. But I think we’re forgetting that, like, Molly can also reach out. It’s not, like, if the doctor doesn’t do it, they’re not going to get this information. (proband)
Participants thought direct contact should be a program, not an individual provider’s responsibility. Pre-consenting programs were frequently suggested.	This doctor doesn’t have time. He does his job. Every patient is important to him, but it’s not his job to call or write letters or send emails.1 (relative) I kind of wonder if, like, if you need consent to do that, like, in your initial intake with Kaiser or, you know, how every so often, is your contact information up to date or all that. And you, like, say can we contact you based on family member information, like, would it be okay if we reached out to you if we find something that might be pertinent to you based on a family member. (proband)
Direct contact programs are a complement to, not replacement of, patient-led familial sharing.	I don’t know about you guys, but I think the family is more powerful in urging their family members. It’s a shared condition we all have. We should think about our kids and our grandkids, so that argument is pretty strong. With the science backed up with Dr. Lee. 1 (proband)