Revealing Registries?
History may be repeating itself; like a flashback of events linking mistrust, manipulation and humiliation to the most sacred of all cares – health.
“Several scientific and social developments are prompting reconsideration of how the imperative of data sharing is conceptualized and implemented. The decreasing costs and increasing accessibility of NGS and cloud computing, along with the growing volume, richness, and complexity of genomic information available, are challenging individual privacy and the traditional methods designed to manage and secure such data (e.g., coding and anonymization).” (3)
The public grows weary of volunteering their private information to donor registries, due to rapid changes in technological advancements – and rightfully so. The larger the database storage is needed; you’d believe the expense of data-protecting software would increase as well. But this is not the case. (3) There’s the issue of tissue being reused in scientific research.
Informed Decisions
Here’s how awareness and educating yourself can influence your decision on revealing protected demographic and historical medical information to donor registries. Even if you are in-between choices, you can certainly ask questions about which identifiers you may or may not want to divulge.
According to Blood Assurance, (1) this delicate information is needed for reasons like:
- Safety for bone marrow recipients
- Creating and scheduling appointments
- Emergency Requests for your specific blood type
- Lab typing and crossmatching
- To contact you if an anomaly is screened
- Legislation requirements
Along with the previous non-exclusive list of information needed for bone marrow donations, there are other secondary or tertiary environments this delicate information could be also stored, such as: (3)
- Voter registration records
- Government census questionnaires
- Genome databases
- Doctor’s offices
- Forensic Labs
When all this information is collectively grouped together, you may be identified again down the road. (3)
You are probably familiar with the consent form required prior to your donation. However, this consent for the procedure itself may not be protected under the Health Insurance Portability and Accountability Act. (1)
When you volunteer your bone marrow and are uneasy about disclosing specific health information, you may opt-in for documenting only what you want to share. Check with your local registry to find out what modifications they have, if any, on the subject. (1) Research studies reveal that most registry donors are so selfless, they don’t mind sharing their PHI for the sake of potentially saving someone else’s life-which is so commendable! (3)
On the other hand, there’s a portion of donors who have sabotaged themselves and patients’ PHI displaying it on social media platforms. (3)
There Goes My Hero has You Covered
Here at There Goes My Hero, Deleting Blood Cancer has many protocols regarding your privacy for both donors and patients. Rest assured your health information is secure, and we do not take this process lightly. DKMS rises above average data protection laws, including composing their own company contracts protecting patient and donor data from being leaked internationally. Private health information (PHI) should only be accessible to providers in search of matches, but not accessible outside of the DKMS database. (2)