Should Individuals Share Their Genomic Profiles?
Level 5 - mechanism / opinion, no new human data
Narrative feature and expert commentary without new empirical clinical trial data (Level 5 by design analogy)
OpenAlex W2886780816 · doi:10.1093/biosci/biy085
What was done
This narrative feature examines the growth of personalized medicine, historical drops in genome sequencing costs, large-scale data collection initiatives (such as the NIH All of Us program targeting one million participants), and public privacy concerns surrounding direct-to-consumer and biomedical genetic data sharing.
What was found
The article reports that individual human genome sequencing costs dropped from roughly $95 million in 2001 to approximately $1,000 (including counseling). It highlights the launch of the NIH All of Us program aiming to recruit one million US adult volunteers for longitudinal health tracking, and notes an early scoping exercise by Wilkins involving interviews with over 700 individuals that identified substantial difficulties in communicating genomics concepts to the public.
Why it matters
As genomic profiling becomes accessible and clinically integrated, longitudinal data sharing is essential for precision medicine, but progress depends heavily on robust data security and public trust.
Limits
The article is a journalistic feature and opinion piece rather than an empirical research study. It presents no new quantitative clinical trial data, systematic review evidence, or formal statistical evaluations of health outcomes.
Cited by
- partial The speed and cost-efficiency of reading and writing DNA has improved exponentially by 10 to 30 million-fold over the last decade or two, doubling at least once a year and sometimes by a factor of 10 per year.