Understanding attitudes of the public toward people with Down syndrome is important because negative attitudes might create barriers to social integration, which can affect their success and quality of life. We used data from two 2008 U.S. surveys (HealthStyles(c) survey of adults 18 years or older and YouthStyles(c) survey of youth ages 9-18) that asked about attitudes toward people with Down syndrome, including attitudes toward educational and occupational inclusion and toward willingness to interact with people with Down syndrome. Results showed that many adults continue to hold negative attitudes toward people with Down syndrome: A quarter of respondents agreed that students with Down syndrome should go to special schools, nearly 30% agreed that including students with Down syndrome in typical educational settings is distracting, and 18% agreed that persons with Down syndrome in the workplace increase the chance for accidents. Negative attitudes were also held by many youth: 30% agreed that students with Down syndrome should go to separate schools, 27% were not willing to work with a student with Down syndrome on a class project, and nearly 40% indicated they would not be willing to spend time with a student with Down syndrome outside of school. Among both adult and youth, female sex and respondents with previous relationships with people with Down syndrome were consistently associated with more positive attitudes. These results may be helpful in the development of educational materials about Down syndrome and in guiding policies on educational and occupational inclusion.

An alarming proportion of incident human immunodeficiency virus (HIV) infections worldwide occur in youth. In the United States, 69% of all new infections among youth occurred in young men who have sex with men (YMSM). Recent studies show the promise of preexposure prophylaxis (PrEP) for preventing HIV infection, but research efforts suffer from disproportionately low representation of the youth who are most at risk. Youth-focused research is critical and should include behavioral, community, and biomedical interventions to create a comprehensive HIV prevention package. The many ethical, legal, and regulatory considerations in conducting HIV research among, and in providing care services to, youth must be addressed so that those at high risk and most likely to benefit can have unfettered access to safe and effective health-promoting interventions. YMSM and minority youth are at substantial HIV risk and urgently need effective HIV prevention tools for which the short and long-term benefits and risks have been carefully considered.

A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole.