BioethxChat
March 3, 2014
Sneak Preview: topics for upcoming chat
T1a: Ethical to search out & target families w genetic mutation that guarantee onset of specific/#RareDisease 4 research? #bioethx
T1b: Do ppl w genetic anomaly/#RareDisease have responsibility to public 2 share info for #meded- case study? #bioethx
T2a: Ethical to not incl parent's #RareDisease health status in offspring med record 2 protect future access to jobs/insurance? #bioethx
T2b: What is HCP responsibility to share genetic info w blood kin? What if lack of info prevents kin from pursuing own HC/insurance? #bioethx
T3: If society says ppl w/#RareDisease shld adopt/hav genetically engineered embryo w/o dz who shld bear costs? Right 2 procreation? #bioethx
T4: Should there be additional protections (financial/emotional) for someone w a rare & fatal disease? If so, what kinds? #bioethx
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For more info on this subject, check out:
1. Health insurance and 'genetic discrimination': Are rules needed?
2. Ethics of Genetic Testing: Medical Insurance and Genetic Discrimination
3. Huntington’s disease: Why those at risk choose not to be tested
4. Ethical and Social Aspects on Rare Diseases
5. Symposium Summary: Ethics and Rare Disease Clinical Trials
6. NIH Database of Rare Diseases
7. NIH Support of Patients & Families (Resources) - Office of Rare Disease Research