Restoring trust vital in public acceptance of the use of residual newborn screening specimens
Government guidelines published today on the use of dried blood spots collected during mandatory newborn screening underemphasize the importance of getting the public on board with the practice, according to University of Michigan researcher.
Educating the public about the value of research on newborn blood as well as asking parents their preference on the storage and use of specimens would go a long way in eliminating government mistrust and opposition to the practice of using newborn blood for valuable research, says Beth A. Tarini, M.D., M.S., a faculty member with the Child Health Evaluation and Research (CHEAR) Unit at the University of Michigan, in a commentary available online today ahead of print in the journal Genetics in Medicine.
The journal is the official, peer-reviewed journal of the American College of Medical Genetics.
Throughout the U.S., state law mandates that newborns be tested shortly after birth for treatable, endocrinologic, metabolic and hematologic diseases.
According to the U.S. Centers for Disease Control, approximately 3,000 babies with severe disorders are identified in the United States each year using newborn screening programs.
In some states, after screening has been completed, the samples are used for research aimed at improving the health of the population such as studying exposures to environmental toxins during pregnancy and early childhood. The majority of the general public has little understanding of the benefits of using these stored blood samples for research purposes.
The recommendations out today by the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children recommendations come after extensive investigation and deliberation involving international and national experts in newborn screening, public health and law, and members of the general public.
The guidelines focus heavily on the legal and ethical procedures that states must follow to permit research using these specimens. But they fall short in addressing the public's increasing apprehension about residual dried blood spots storage and use especially public concerns about privacy and potential government misuse of samples.
Especially in light of two lawsuits, claiming research use of sample specimens violated privacy laws, were filed in 2009.
Filed by families in Minnesota, the first lawsuit alleged that storage and use of DBS violated in the state's Genetic Privacy Act. It was dismissed by the court, claiming that the Act was not applicable to the NBS program. The second lawsuit, filed against the Texas State Department of Health by families who claimed storage and use of NBS for undisclosed research purposes violated their constitutional protection from unlawful search and seizure. The case was settled.
Much of the mistrust is rooted in public rhetoric that claims that samples may be used to ration healthcare or create a government DNA database for tracking citizens, says Tarini, M.D., M.S., also a pediatrician at U-M C.S. Mott Children's Hospital.
"These claims are unfounded and, in some cases, represent a co-opting of these issues for broader political agendas," Tarini explains in her commentary.
However, these claims can easily pollute public opinion when the public is not properly educated about the use of specimens and when suspicion is fueled by government mistrust, warns Tarini.
In order to prevent the spread of fear and misinformation regarding specimen use and storage, Tarini stresses that the health care community should engage the public and explain the value of the specimens as a promising resource for the public good.
"Although the value of the specimens may be forgone conclusions to those of us who work in public health it is likely not that way for the general public," Tarini adds.
Tarini urges that educating the public on these benefits is critical. "The real challenge lies in getting the public to believe in these processes and the value of studying these specimens."
According to Tarini, the most effective way to foster trust and lessen public concern may be to give parents the ability to consent to the use of their child's specimens for research use, as the state of Michigan has done.
"Paradoxically, it is likely that allowing parents the opportunity to say no may actually get them to say yes," Tarini concludes.
Provided by University of Michigan
- Survey: Ask permission to use newborn data, parents say Jul 15, 2009 | not rated yet | 0
- Most states unclear about storage, use of babies' blood samples, new study finds Mar 28, 2011 | not rated yet | 0
- Ethics debate over blood from newborn safety tests Feb 08, 2010 | not rated yet | 0
- Parents fear errors during children's hospitalization Aug 03, 2009 | not rated yet | 0
- States expand newborn screening for life-threatening disorders Feb 18, 2009 | not rated yet | 0
- Motion perception revisited: High Phi effect challenges established motion perception assumptions Apr 23, 2013 | 3 / 5 (2) | 2
- Anything you can do I can do better: Neuromolecular foundations of the superiority illusion (Update) Apr 02, 2013 | 4.5 / 5 (11) | 5
- The visual system as economist: Neural resource allocation in visual adaptation Mar 30, 2013 | 5 / 5 (2) | 9
- Separate lives: Neuronal and organismal lifespans decoupled Mar 27, 2013 | 4.9 / 5 (8) | 0
- Sizing things up: The evolutionary neurobiology of scale invariance Feb 28, 2013 | 4.8 / 5 (10) | 14
Classical and Quantum Mechanics via Lie algebras
Apr 15, 2011 I'd like to open a discussion thread for version 2 of the draft of my book ''Classical and Quantum Mechanics via Lie algebras'', available online at http://lanl.arxiv.org/abs/0810.1019 , and for the...
- More from Physics Forums - Independent Research
More news stories
Artemio Martinez balanced his corpulent frame on a stool in a Mexico City street taco stand, downing a sweet soda and eating a final pork-filled corn tortilla.
Health 46 minutes ago | not rated yet | 0
People eating at fast food restaurants largely underestimate the calorie content of meals, especially large ones, according to a paper published today in BMJ.
Health 12 hours ago | not rated yet | 0
Don't doubt it when a woman harried by hot flashes says she's having a hard time remembering things. A new study published online in Menopause, the journal of The North American Menopause Society (NAMS), helps confirm with o ...
Health 13 hours ago | not rated yet | 0
The Senate has overwhelmingly rejected an amendment allowing states to require labeling of genetically modified foods.
Health 14 hours ago | not rated yet | 1
The World Health Organization voiced deep concern Thursday over the SARS-like virus that has killed 22 people in less than a year, saying it might potentially spread more widely between humans.
32 minutes ago | 5 / 5 (1) | 0
(AP)—Researchers examining the incidence of brain cancer at jet engine manufacturer Pratt & Whitney in Connecticut say they have found no statistically significant elevations in the rate of cancer among workers.
22 minutes ago | not rated yet | 0
(Medical Xpress)—Regulating the distribution of power in neurons is done by a system that makes the national electric grid look simple by comparison. Each neuron has several thousand mitochondria confined ...
13 hours ago | 4.8 / 5 (6) | 0 |
The British Menopause Society and Women's Health Concern have today released updated guidelines on Hormone Replacement Therapy (HRT) to provide clarity around the role of HRT, the benefits and the risks. The new guidelines ...
2 hours ago | not rated yet | 0
A brief visual task can predict IQ, according to a new study. This surprisingly simple exercise measures the brain's unconscious ability to filter out visual movement. The study shows that individuals whose ...
18 hours ago | 4.5 / 5 (10) | 1 |
Teams of highly respected Alzheimer's researchers failed to replicate what appeared to be breakthrough results for the treatment of this brain disease when they were published last year in the journal Science.
16 hours ago | 5 / 5 (1) | 2 |