Parents' Online Portrayals of Pediatric Treatment and Research Options

Parents of seriously ill children face difficult decisions when standard therapies are limited or ineffective. In their search for information, they may turn to websites created by other parents facing similar experiences. We conducted a qualitative content analysis of 21 websites created by families with children affected by cancer or genetic disease, two serious conditions with a range of treatment and clinical trial options. Our research questions address how parent authors portray serious pediatric illness, available options, parties to decision making, and sources of influence. In addition, we examine what these sites reveal about family vulnerability to various risks, particularly the risk of misunderstanding the distinction between standard treatment and research and the risk of overestimating the likely benefits of research participation, as well as whether vulnerability varies by type of condition. Our results demonstrate typically favorable views on research, but with inadequate distinctions between research and treatment and a complex set of trade-offs in consideration of research risks and potential benefits. While portraits of vulnerability emerge for both parents and children, so do portraits of strength and resilience. As a result, parents describe frustration with both under- and over-protection from research participation. Our discussion of these findings clarifies the potential for parent-authored websites to inform and influence families considering research and treatment options for their seriously ill children

“That's a good question”: University researchers' views on ownership and retention of human genetic specimens

To explore the views of university-based investigators conducting genetic research with human specimens regarding ownership and retention of specimens, and knowledge of related institutional review board and university policies

“That's a good question”: University researchers' views on ownership and retention of human genetic specimens

PURPOSE: To explore the views of university-based investigators conducting genetic research with human specimens regarding ownership and retention of specimens, and knowledge of related institutional review board and university policies. METHODS: Data were collected in three phases: a qualitative pilot study of 14 investigators; a web-based survey taken by 80 investigators; and follow-up, in-depth interviews with 12 survey respondents. RESULTS: Investigators named a variety of single or multiple owners of human specimens and often expressed confusion regarding specimen ownership. Most associated ownership with rights to control, and responsibilities to maintain, specimens. Investigators viewed specimens as “precious” resources whose value could be increased through long-term or infinite retention, particularly in light of anticipated technological advances in genome science. Their views on ownership and retention were shaped by perceptions of institutional review board policies as immortalized in subject informed consent documents, rather than knowledge of actual policies. CONCLUSION: Long-term retention of human specimens makes confusion about ownership particularly problematic. Given findings that investigators’ views on ownership and retention are largely guided by their perception of university policies, the need for clear, consistent policies at the institution level is urgent