By failing to follow informed consent protocols and regulations, a researcher engaging in CBPR may inflict permanent harm on the participating community and chill future research among disadvantaged populations.
Paula Tironi, JD, LLM and Monique M. Karaganis, MD
While parents often have legal authority to make decisions regarding pediatric palliative care, federal and state statutory and case laws, like CAPTA, impose significant restrictions on that authority.
Ownership rights to tissue donated for research end when the tissue leaves the body, as does all claim to benefit from commercial cell lines or other products derived from the tissue.