In today’s modern world, many feel that personal privacy is slipping away. This is especially true when it comes to access to medical records, which has become a hot-button ethical issue. Many patients’ health records and clinical tissues are being used for medical research purposes, even without patient consent but completely compliant with federal regulations. But a new study shows a chaining attitude towards increased access to medical records.
“There are many technical and financial challenges to establishing a biobank, but we think the largest risk to the enterprise is a loss of public trust if the public is surprised and alarmed by how research is conducted at institutions like ours,” says Dr. Jeff Botkin, lead investigator of a study designed to better understand public attitudes regarding these practices.
The results of the study, published this month in the Journal of Community Genetics, reveal that when the general public is educated about the intricacies involved in collecting and using this information in population-based research—particularly the safeguards and confidentiality measures in place to maintain anonymity—they support it.
Read the full, original story: Without Consent: A Jaded Public Now Has Lax Attitudes About Access To Their Medical Information
- Should physicians or counselors control access to your genetic information? Genetic Literacy Project
- Do we need to be protected from our genomes? Pacific Standard
- Genetic Information Nondiscrimination Act: much ado about nothing? National Law Review