Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of individual genomic research findings that are incidental to the aims of the research. Although researchers and ethicists have raised theoretical concerns about incidental findings in the context of genetic research, next-generation sequencing will make this once largely hypothetical concern an increasing reality. Most commentators have begun to accept the notion that there is some duty to disclose individual genetic research results to research subjects; however, the scope of that duty remains unclear. These issues are especially complicated in the pediatric setting, where subjects cannot currently but typically will eventually be able to make their own medical decisions at the age of adulthood. This article discusses the management of incidental findings in the context of pediatric genomic research. We provide an overview of the current literature and propose a framework to manage incidental findings in this unique context, based on what we believe is a limited responsibility to disclose. We hope this will be a useful source of guidance for investigators, institutional review boards, and bioethicists that anticipates the complicated ethical issues raised by advances in genomic technology.

OBJECTIVE To examine compliance with ASRM's ethical guidelines regarding trait-based payment variation, presentation of risks and minimum recruitment age. DESIGN In June 2010, we systematically examined 207 websites, of which 102 were egg donor agency or IVF clinic websites that both recruited online and displayed compensation amounts. SETTING The Internet MAIN OUTCOME MEASURES Mention of increased payment for particular donor traits, recruitment age below 21, noting risks to donors. RESULTS Of the 102 sites, considerable numbers were non-compliant with ASRM's guidelines that prohibit varying compensation based on a donor's traits (34%), recommend an age of 21 or above (41%) and presentation of risks alongside compensation (56%). Trait-based payment variation was associated with being an agency rather than a clinic (p<.001), location in the West (p<.001), not being endorsed by ASRM or SART (p<.001), and referring to ASRM's guidelines about compensation (p<.001). Of sites mentioning traits, prior donation success was the most commonly paid for trait (64%). CONCLUSION Our data, the first to systematically analyze agency and clinic websites reveal that a large proportion do not follow ASRM's guidelines. These data have critical implications for policy, practice and research, suggesting needs for consideration of possible changes in guidelines, and/or improvements in compliance and monitoring by ASRM or others.

Background: Evidence on effective engagement of diverse participants in AD prevention research is lacking. Objectives: To quantify recruitment source in relation to race, ethnicity, and retention. Design: Prospective cohort study. Setting: University lab. Participants: Participants included older adults (N=1170) who identified as White (86%), Black (8%), and Hispanic/Latino ethnicity (6%). Measurements: The Cognitive Aging Lab Marketing Questionnaire assessed recruitment source, social media use, and research opportunity communication preferences. Results: Effective recruitment methods and communication preferences vary by race and ethnicity. The most common referral sources were postcards for racial minorities, friend/family referrals for Hispanic/Latinos, and the newspaper for Whites. Whereas Whites preferred email communications, Hispanic/Latinos preferred texts. Conclusions: Recruiting diverse samples in AD prevention research is clinically relevant given high AD-risk of minorities and that health disparities are propagated by their under-representation in research. Our questionnaire and these results may be applied to facilitate effective research engagement.

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