Waiving informed consent could expand newborn screening study
Informed consent has long been the cornerstone of ethical and safe medical research involving patients and healthy volunteers.
But for the testing of certain new screening techniques for newborn babies, individual patient consent may limit study groups, and even create a barrier to the implementation of techniques that are safe and provide the most health benefit to newborns, U-M research finds.
C.S. Mott Children’s Hospital researcher and lead author Dr. Beth Tarini says waiving informed consent for population-based newborn screening research would allow for a more complete evaluation of the safety and effectiveness of these tests before broad implementation. A paper on the findings appears online and in the upcoming Feb. 15 issue of the American Journal of Medical Genetics.
“Historically, the vast majority of newborn screening tests currently being used have been not studied in large populations prior to their adoption into state programs across the country. As a result, these tests may not be adequately evaluated before their prime time debut,” says Tarini, a clinical lecturer and member of the Child Health Evaluation and Research Unit in the Division of General Pediatrics at Mott.
In the article, Tarini and her colleagues argue that instead of obtaining documented individual patient consent for some kinds of newborn screening research, the emphasis should be on finding effective ways of communicating with and educating families about newborn screening research, such as is possible through the use of brochures, Web sites and other materials. Further, follow-up for confirmation of a diagnosis, and counseling for genetic and social issues should be a requirement for such studies. Parents should always have the opportunity to opt-out of the research study if they choose.
“The goal should be to evaluate new tests in an ethical manner that protects and respects both parents and children,” Tarini says. “Without a broader interpretation of these research regulations for promising newborn screening tests, we may create incentives for the adoption of inadequately evaluated tests.”
Bach organ recordings a ‘project of a lifetime’ for professor
James Kibbie, professor of organ at the School of Music, Theatre & Dance, has completed the first phase of an ambitious project to record the complete organ works of Johann Sebastian Bach.
“This is the project of a lifetime,” says Kibbie, who widely is regarded as an authority on the performance of Bach’s organ works. “More than anything else, it will define my work as a Bach performer.”
When finished, the three-year project will make the complete canon of Bach organ works — some 270 compositions totaling approximately 18 hours — available as free Internet downloads. Many of the works are being performed on the original 18th-century Silbermann organs, which the composer himself played. Bach composed for organs ranging from the 17th-century North German instruments he admired in his youth to the mid-18th-century organs he himself helped design during his “Leipzig years.” For these recordings, Kibbie has selected instruments matched to the varying stylistic requirements of the Bach repertoire.
The completed first phase of the project consists of 95 Bach works recorded on the organs of the Dresden Kathedrale and the Georgenkirche and Marienkirche in Rötha, Germany. Those recordings include the Leipzig Chorales, the Kimberger Chorales, and a variety of other works by Bach and are now available on Block M Records, a recording label managed by the School of Music, Theatre & Dance.
The Web site www.blockmrecords.org/bach also includes information on the organs and the registration for each work. The remaining works in the Bach catalogue will be added in 2008 and 2009.
— Betsy Goolian, School of Music, Theatre & Dance
Blacks measure up favorably on environmental awareness
When activist groups such as the Sierra Club and the World Wildlife Fund make news trying to save the planet from environmental disaster, blacks are rarely visible. But this is not a true reflection of where the black community stands on green issues, a professor says.
“It is striking to me that when surveys focus specifically on pollution concerns, such as air and water pollution, exposure to toxic substances, and the like, African Americans consistently express greater concern about such issues than white Americans,” says Paul Mohai, author of the study, Dispelling Old Myths: African American Concern for the Environment. His research shows that attention to pollution is directly related to the environmental quality of neighborhoods.
“There have been many studies done over the past two decades that convincingly document the disproportionate burden of environmental hazards in African American and other communities (of people of color),” says Mohai, a professor at the School of Natural Resources and Environment. “They are particularly concerned about possible health effects. But other quality of life impacts are also of concern, such as visual blight, noxious odors, noise, traffic congestion, the safety of residents’ children and social stigmatization.”
Furthermore, surveys Mohai and colleagues conducted in Detroit debunked assumptions that blacks’ environmental interests were limited to direct local nuisances. Their 2002 survey found that blacks expressed greater concern than whites not only regarding pollution and neighborhood environmental problems, but also about nature preservation and global environmental issues.
What’s more, black residents also take action on green issues. For instance, Mohai’s study found that of the respondents who often or always made pro-environmental lifestyle choices, blacks outdid whites for buying pesticide-free food, driving less and eating less meat. Blacks came up short, however, on recycling: While 64 percent of whites recycled, 44 percent of blacks did.
What appears to be low black participation in the green movement is an illusion: In 2000 a national survey found 9 percent of whites versus 8 percent of blacks belonged to an environmental group. Instead of joining well-known and highly publicized national organizations, black environmental activists often form their own local groups. Green activism in the black community dates back to the 1980s when the environmental justice movement sprang up as grassroots mobilizations opposing the dumping of toxic waste near black neighborhoods.
— Cliff Hocker, School of Natural Resources and Environment
Early intervention brings better behavior for welfare youths
Children in the welfare system would have a better chance of staying out of trouble if their caregivers are trained in ways to prevent delinquent behavior before it festers, a new study says.
The current child welfare system emphasizes services to youths experiencing serious behavior problems, but spends less effort on preventive services, says Andrew Grogan-Kaylor, assistant professor in the School of Social Work and lead author of the study.
“These findings suggest the preventive services when youths first enter the child welfare system may alter the pathway to delinquent behaviors for them,” Grogan-Kaylor says. He collaborated with Mary Ruffolo and Robert Ortega, both with the School of Social Work, and Jenell Clarke, a doctoral student in the joint program in social work and psychology.
Although specific suggestions are not offered in the study, the authors say that caregivers could meet monthly with a social worker to discuss ways to maintain a positive relationship with their children. These sessions could address issues such as coping with stress, active listening and communicating honestly. Caregivers also could be encouraged to have regular family times with the child, such as playing board games and reading books.
To improve monitoring, caregivers could be more aware of where the children are and ask what they are doing and who they are spending time with on a regular basis. The idea of monitoring could be extended to involve group discussions with the parent-child or teens talking with other teens about their lives, the authors indicate.
The study, which looks at nearly 1,200 teens ages 11-14 years, uses data from the National Survey of Child and Adolescent Well-Being. Researchers analyzed the child welfare system risk factors the youths faced living at home and the level of delinquent behaviors that occurred during an 18-month analysis.
Older youths were more likely to engage in delinquent behaviors than younger youths. Girls were less likely to engage in delinquent behaviors than boys. Race or ethnicity did not have a statistically significant relationship with engaging in delinquent behaviors.
Compared with neglected youths, kids who were physically abused were more likely to engage in delinquent behaviors. Other forms of child maltreatment did not have a statistically significant effect on youths who acted badly, Grogan-Kaylor says.
“An important finding in our study is that race or ethnicity did not increase the likelihood of a youth engaging in delinquent behavior over time,” Ortega says. “However, the reality is that throughout this country there is a disproportionate number of youth of color in the child welfare system. By emphasizing effective prevention interventions, we are increasing the likelihood that many of these maltreated youth will be steered away from a delinquency path.”
The findings appear in the current issue of Child Abuse & Neglect.
— Jared Wadley, News Service
