| Research with Residual Samples |
| Permission for Current and Future Samples |
What’s important is just giving people a choice. I don’t like not having a choice and that’s what bothers me. I want to have the choice. I need to sign something to let me know that they’re doing some sort of research. Because that my baby’s blood. It’s respect. It should be an opt-in. I give my permission to do this. I’ve worked for different state agencies and there’s not a lot resources [for opt-in].
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| Timing of Permission |
I think when we go to the prenatal exams. From the beginning of the pregnancy. It’s the best way to start talking about that. I think you should have consent to allow them to take the blood spot [NBS screening].
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| Mixed Opinions on Permission for Past Samples |
They should try to find me to use it [past samples]. I would want to be contacted to give consent [for past samples already collected]. I mean it’s inconceivable that the fact that they could actually track down how many millions of babies are born each year. First of all, it’s going to cost you way too much money.
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| Conditions for Allowing Research |
| Type of Research |
Health-related research. As long as it’s for medical research. Are drug companies going to start targeting what they found within me? I trust the medical community.
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| Identifiable Samples for Research |
Keep names on them because if they find something in my kid’s sample that can help have a healthier life, I’d want to know about it immediately. It’s got to be all or nothing. If you don’t have that person name, that research is useless.
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| Personal Control |
I think they should ask them would you like us to keep with the baby’s name or would you like us to keep it anonymous. I think that in the consent there should be specific questions about what you want to use the blood to research for. Inform them [parents] when they’re going to use their blood, informing them of the progress if anything is found. The opportunity to change your mind in the future or the child.
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| Length of Storage and Ownership of the Sample for Research |
| Length of Storage |
Some type of time limit is needed. As long as it’s possible you could do it with the understanding that once the child does reach adult age they have the opportunity to change the decision that their parents made if they so choose.
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| Ownership of the Samples |
Because that’s your child’s blood. It’s not [the] state’s blood. It ‘s your child, part of your child. At some point like at 18 years, there’s some process within the system where you can reassert your permission for the sample. Parent owns them and then later on the child, and let the child know, “We have a sample of your blood.
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| Perceived Risks and Benefits of Research |
| Risk of Research on NBS Participation |
I’m somewhat embarrassed to say that I did not understand that they use it for more than one test [PKU]. When they do the test on the child - I never knew it was for that [NBS]. I don’t have the knowledge about it. For the first initial tests that they do, yes [NBS], I think that is a necessity. But as far as keeping my blood samples, I don’t want that to be done.
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| More Risks Identified than Benefits |
But even though GINA is in existence, the anonymity, I don’t believe in that. It’s not dependable. And I wouldn’t want my child in 21 years or 18 years of age going for health insurance for there to be a back door to see what might be coming up, especially even if it’s private or federal insurance.
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| Personal sample versus Child’s sample |
I don’t care about me, but my daughter’s. I don’t want my daughter’s DNA being used for anything. I think with strict policies and rules in place, research could be beneficial but it can also be very dangerous for our kids. I think research is necessary and there’s a lot of benefit, but I want my child’s name off.
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| The Importance of Education |
| Prenatal Education |
Informing the parents in the hospital before it’s done, what these are going to be used for, what they could be used for in the future. As women, while we’re getting prenatal care. Because once we have the children, all of focus is taking our ourselves and the child. We wouldn’t have time to be reading brochures and letters.
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| Community Outreach |
So that they [public] can be aware of it, don’t just limit it to the people having babies. Like they advertise immunization, the public needs to be informed. Advertisements on the television.; and Put a billboard up about it.
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| Ethical Considerations with Respect to Residual Samples |
| Invasion of Privacy |
There’s an ethical thing with this. Whether people have the right to collect samples and use it for research without people’s knowledge. It’s a little bit of a violation of your privacy. Well, my attitude is who are you to invade my child and take his blood or her blood and use it for your purposes? You don’t know better than me. I am the parent. That’s my child, not yours.
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| Greater Good |
I think the very least we could do is take a little more of a gamble and give permission for the residual samples to be used in research that could possibly benefit someone just besides ourselves. At some point you have to trust that these people are doing the right thing, and that there’s not going to be an abuse.
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| Highlight the Samples Contain DNA |
It’s your DNA. They [children] need to know where their DNA is. You guys invade my privacy, you’re holding my blood, my DNA somewhat hostage. When you’re taking something like that, blood or samples of DNA, that there should be some very, very strict, I mean very strict policies.
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