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
- More from Physics Forums - Independent Research
More news stories
Driving and hands-free talking lead to spike in errors, study shows
Talking on a hands-free device while behind the wheel can lead to a sharp increase in errors that could imperil other drivers on the road, according to new research from the University of Alberta.
Health
8 hours ago |
not rated yet |
0
About one in four uninsured could be excluded from ACA
(HealthDay)—More than one in four of those eligible for new premium assistance tax credits under the Affordable Care Act (ACA) do not have a checking account and will not be able to receive premiums from ...
Health
10 hours ago |
not rated yet |
0
Audiologists recommend smart phone apps to monitor noise levels
After studying noise in one French Quarter neighborhood of New Orleans to determine whether or not noise levels exceeded municipal ordinances, Annette Hurley, PhD, Assistant Professor of Audiology at LSU Health Sciences Center ...
Health
11 hours ago |
not rated yet |
0
Young children who miss well-child visits are more likely to be hospitalized
Young children who missed more than half of recommended well-child visits had up to twice the risk of hospitalization compared to children who attended most of their visits, according to a study published today in the American Jo ...
Health
11 hours ago |
not rated yet |
0
Do doctors understand the individualisation of treatments?
The individualisation of drug treatments to support patients to self-manage their conditions is a concept that sits at the heart of policy, but a recent study in BMJ Open shows that there is no concrete defini ...
Health
14 hours ago |
3 / 5 (1) |
0
Engineered cytomegalovirus protects monkeys from HIV equivalent
(Medical Xpress)—A new study by researchers in the US has shown that an ancient virus can be modified to help in the fight against the simian immunodeficiency virus SIV, which is the equivalent in monkeys ...
Researchers identify first drug targets in childhood genetic tumor disorder
Two mutations central to the development of infantile myofibromatosis (IM)—a disorder characterized by multiple tumors involving the skin, bone, and soft tissue—may provide new therapeutic targets, according to researchers ...
Hormone levels may provide key to understanding psychological disorders in women
Women at a particular stage in their monthly menstrual cycle may be more vulnerable to some of the psychological side-effects associated with stressful experiences, according to a study from UCL.
Going live: Immune cell activation in multiple sclerosis
Biological processes are generally based on events at the molecular and cellular level. To understand what happens in the course of infections, diseases or normal bodily functions, scientists would need to ...
Depression raises diabetics' risk of severe low blood sugar episodes
(Medical Xpress)—Patients with diabetes who are depressed are much more likely to develop episodes of dangerously low blood sugars, or hypoglycemia, than are those who are not depressed, a new study has ...
Help at hand for people with schizophrenia
How can healthy people who hear voices help schizophrenics? Finding the answer for this is at the centre of research conducted at the University of Bergen.
Jun 14, 2011
Rank: not rated yet
If you want public approval, you don't need to inform the public that the information is useful, you need to protect the public and inform them of that protection.