<story><title>Do no harm petition: Don&apos;t give big tech access to our medical records</title><url>https://act.wemove.eu/campaigns/medical-records</url></story><parent_chain></parent_chain><comment><author>iandanforth</author><text>I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I&amp;#x27;ve personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn&amp;#x27;t wish that on my worst enemy.&lt;p&gt;Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could be decades ahead of where we are today. There are legitimate concerns about health privacy (especially for women in the US) but the upside is just so much larger than the harms. It could be 10x less costly and time consuming to do both epidemiology and longitudinal intervention studies if we only had access to data. We could be directly tackling disease causal factors in ways that researchers today only dream of. It really is tens of thousands of lives lost each year that could have been saved if we could only have moved faster toward interventions.&lt;p&gt;I believe medical records should be &lt;i&gt;open&lt;/i&gt; and laws should address how people use the data, not trying to make something so valuable to all humanity secret from the beginning. For example you can download my genetic code here: &lt;a href=&quot;https:&amp;#x2F;&amp;#x2F;www.openhumans.org&amp;#x2F;member&amp;#x2F;iandanforth&amp;#x2F;&quot; rel=&quot;nofollow&quot;&gt;https:&amp;#x2F;&amp;#x2F;www.openhumans.org&amp;#x2F;member&amp;#x2F;iandanforth&amp;#x2F;&lt;/a&gt;</text></comment>
<story><title>Do no harm petition: Don&apos;t give big tech access to our medical records</title><url>https://act.wemove.eu/campaigns/medical-records</url></story><parent_chain></parent_chain><comment><author>xaedes</author><text>In Germany they decided to make the EPA (electronic medical record) opt-out starting by 2024. Managed by &amp;quot;gematik GmbH&amp;quot;, a company with limited liability. Because why should the entity responsible for all medical records have some liability. It is a joke, a bad one.&lt;p&gt;They don&amp;#x27;t even say how to opt-out.</text></comment>