| Challenges to the Value of the Communication |
Individual findings are not “information” worth communicating. “[P]reliminary results do not yet constitute ‘information’ since ‘until an initial finding is confirmed, there is no reliable information’ to communicate to subjects ….'”166 Returning results is ineffective: even if participants are not harmed by it, they may fail to gain any benefits. Returning results may fail to help people manage their health risks, because genetic risk is not an effective motivator of behavioral change.167
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| Concerns About Listener Vulnerability |
3. Returning results may expose participants to anxiety. Returning results could cause participants to experience anxiety about their test results.168 In situations where people's biospecimens have been studied without their consent, returning results could further upset them by making them aware that their specimens were used in research without their knowledge.169 4. Participants may misunderstand their results. There is thought to be a high risk that participants will misconstrue the meaning of their genetic test results.170 Laypeople may fail to appreciate the uncertainty of research results and are prone to therapeutic misconception (the belief that research results are more useful for clinical purposes than the results actually are).171 “[E]ven … confirmed findings may have some unforeseen limitations.'”172 5. Returning results may cause participants to make bad healthcare decisions that harm them. Returning results could cause unnecessary (and possibly harmful) medical interventions.173 6. Returning results exposes participants to the risk of stigmatization or discrimination. Telling people their test results may place them at risk of stigmatization or discrimination in employment or insurance.174 Communicating genetic information to one individual may have impacts on genetically similar family members and population groups, possibly subjecting them to adverse impacts.175 7. Participants' preferences to receive return of results may not reflect what they actually want. Participants' expressed preferences to receive their test results may be unreliable,176 unstable over time,177 based on false beliefs178 or misunderstandings about the uncertainty of results,179 or may be irrational and ill-informed.180
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| Concerns About Broader Economic and Social Harms to the Public |
8. Returning results may cause participants to over-consume follow-up healthcare services. Returning results creates increased demand for follow-up care and places burdens on scarce healthcare resources as participants seek to clarify the impact of their genes.181 9. The cost of returning results may harm the research enterprise. The high cost of returning results could reduce the availability of funds for research.182 Note, however, that much of the perceived cost comes from the cautious view's insistence that only high-quality, confirmed results should be returned. This insistence entails significant investment to enhance certainty prior to return of results. 10. Participants may corrupt genetic understanding as they attempt to decipher the meaning of their test results. After receiving results, participants may draw scientifically invalid conclusions based on blogs and other postings in communities formed by laypeople who share particular genes.183 Community beliefs may supplant valid science and propagate inaccurate “disease legends.”184
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