Table 2.
Facebook user comments on biobanking and newborn screening: themes and sample quotations (paraphrased)
| Theme (frequency) | Sample quotations |
|---|---|
| Content themes | |
| Consent (48) | • I never signed a consent form, and neither did my parents. What a violation of rights! |
| Privacy (39) | • Isn’t this against the 4th amendment? • I don’t want the government to have my genetic information; they may not share your name, but they’ve got it. |
| DBS use (23) | • Is it possible to find out which studies my bloodspot has been used for? • I wonder if they could be ever be used unethically. • Can they be used for stem cell research? |
| Identifiability (23) | • If “names are removed,” how can they be destroyed? There must be personal info attached. |
| Inclusion (21) | • I don’t remember whether I signed a form 20 years ago or not. Is it possible to find out if my kid is in this? • What if I was born at home? |
| Benefits (18) | • Why would you waste a resource that could otherwise help people and find a cure a serious disease? |
| Trust or mistrust (18) | • I don’t believe they’d only use this for health research. • You’re naïve if you think the government isn’t storing all our information. • You’re paranoid. This isn’t a conspiracy, it’s a program to help people. |
| Destroy (18) | • How can I get my bloodspots removed or destroyed? |
| Genetics (17) | • Do the bloodspots contain DNA? • Hahaha! Now the government has our genes. Yay! |
| Government (16) | • This is an abuse of government power. |
| Awareness (14) | • It’s scary that this was done without me knowing. • I’m ok with this but only if people know about it. Transparency would help. |
| NBS (14) | • I remember the heel-prick test, but I don’t remember them asking about storing the blood for research. • What illnesses can the newborn screening tests detect? |
| Altruism (14) | • People should support beneficial research. It’s selfish to do otherwise. |
| Law (7) | • Can these samples be used for law enforcement with a subpoena? • I feel like this is a violation of my constitutional rights. |
| Attitudes/emotive valences | |
| Negative valence (36) | • It’s BS that they took my children’s blood without permission. • Destroy mine—I’ll pass on having my DNA stored. |
| Positive valence (33) | • It’s awesome to think my bloodspot is out there helping people. • All newborns should donate blood for research for the good of all. People who don’t agree would change their minds if they had a baby who was seriously ill. |
| Surprised (9) | • You took my blood and stored it for 25 years?! I had no idea. WTF! |
| NBD (5) | • Who cares? |
| Conflicted (4) | • I have mixed feelings about this. It seems like a good idea, but also creepy. |
| Comment attributes | |
| Answers a question: 12 Asks a question: 53 Relates a personal experience: 41 Includes a link: 35 |
Tags another Facebook user: 30 Conveys humor: 26 Judges other views: 21 Conveys a mistake: 14 Question/mistake not addressed: 4 |
| Keywords DNA (16), LOL/LMAO (13), <specific health conditions> (8), clone (5), creepy (5), cord blood (4), WTF (3), catalog (2), Henrietta Lacks (1) | |