Pepijn<p>update: Thanks for sharing and commenting. I got some good POV via DM & publicly!</p><p>While I asked for one thing (the necessity of patient databases in rare disease research / clinical trials) many commenters focussed on the data security aspect: I was taken aback that without prompting most medical researchers mentioned they would not register their own information in a US-run database as the one I asked about. Something really broke there.</p><p><a href="https://mastodon.online/tags/ethics" class="mention hashtag" rel="tag">#<span>ethics</span></a> <a href="https://mastodon.online/tags/science" class="mention hashtag" rel="tag">#<span>science</span></a> <a href="https://mastodon.online/tags/medical" class="mention hashtag" rel="tag">#<span>medical</span></a> <a href="https://mastodon.online/tags/research" class="mention hashtag" rel="tag">#<span>research</span></a> <a href="https://mastodon.online/tags/data" class="mention hashtag" rel="tag">#<span>data</span></a> <a href="https://mastodon.online/tags/privacy" class="mention hashtag" rel="tag">#<span>privacy</span></a></p>