Supplemental Quotes Regarding Participants’ Sources of Support and Discomfort

Sources of Support:Sources of Discomfort:
Some reasoned that anonymizing samples protected them from possible harms:
“I’m fine with, like, my kid’s blood being kept indefinitely as long as it’s anonymous. It’s not doing any harm to anyone. It’s never going to have any repercussions. By allowing them to use this blood for research, you’re never saying that, somewhere down the road, an insurance company can say, oh, well, your blood got tested for this and you have this disease so we’re not going to cover you. It’s not admissible for anything else. It’s just for the purposes of their anonymous research and for quality control. So if it never has any repercussion to the kid, then I don’t see any harm in it.” [Sheryl]Some suspected that others might not feel comfortable with all types of research:
“I can foresee there are certain types of research that not everyone is going to be ok with; probably even a majority of Canadians would not be OK with.” [Tracey]
Others were concerned about the security of storage facilities or “nervous” [Tracey] that samples might fall into the wrong hands, such as insurers or other “corporations” [Aisha]:
“It could be subpoenaed later to get… or, like, someone can request and through a court get a court order to go and get this genetic material that belongs to your baby. That I find I’m a little more nervous about.” [Tracey]
“One of the corporations is going to pay for all these blood samples which is there thousands. And they might be using it for different purposes.” [Aisha]
Others assumed that the general public would be supportive of the endeavor because the benefits of storage for research were clear. For example, this participant wondered why storage for research would even be questioned:
“What are the consequences? I don’t understand why it’s even a problem. Why wouldn’t anybody want [the samples] stored for further research? Why are they even asking? Like, why are you asking?” [Joan]Some also questioned the limits of the secondary uses of the samples for research. One critic explained her concern about the lack of governance of these “secondary purposes”:
“And there is a risk because you don’t know. Once it’s out of someone’s hand and there’sa secondary purpose, you don’t know what the end result will be. You don’t know where that end user might possibly be.” [Evelyn]
Some believed the benefits of research outweigh the risks:
“There will always be negatives, you know, but I think the true research outweighs [them].” [Francis]Some did not feel it was appropriate to have consent for screening in a “package” with consent for storage for research:
“I think they [parents] should have an option. It shouldn’t be a package of yes or no for everything.” [Avery]