The EHDS imposes Member States to develop an opt-out possibility for secondary use of health data. Opt-out means choosing not to participate in something or saying "no" to a service, activity, or use of your data. For example, if a company sends you promotional emails, you can opt-out to stop receiving them. In health care, it refers to the ability to decline or stop certain actions, like having your data used for specific purposes. GDPR and EHDS legislation give people an easy way to opt-out, but there is a risk to it. For example, if a company sends you promotional emails, you can opt-out to stop receiving them. If fewer people share their data, researchers might not have enough information to study diseases, develop treatments, and improve healthcare practices in general. Moreover, if certain groups of people opt out (e.g., specific demographics or regions), the data may become biased. This can lead to medical findings that only apply to a narrow population and exclude underrepresented groups. Without enough data, it becomes harder for public health organizations to track disease outbreaks and to respond to public health crises effectively. People who opt out might miss benefits, such as early disease detection or being part of cutting-edge clinical trials. Someone's health condition might go unnoticed if their data isn’t included in population-wide screenings or analyses. While protecting privacy is critical, finding a balance between individual rights and collective benefits is essential for advancing healthcare and saving lives.
