Navigation Links
Parents don't fully understand biobank research, study finds

Researchers who collect genetic samples from children for medical research need to explain the process more clearly to parents, according to a new study that suggests many parents don't fully understand the finer details about how these samples will be used and stored. The study was published in June in Genetics in Medicine.

Kim McBride, MD, MS, principal investigator in the Center for Cardiovascular and Pulmonary Research in The Research Institute at Nationwide Children's Hospital, and colleagues followed up with families enrolled in a genetic biobanka storage facility for DNA, genetic data, and tissue samplesafter their initial consent, to find out whether they were fully aware of the nature of their agreement. The results were alarming: more than half of all parents misunderstood key concepts of the study.

Ensuring parental understanding of the consent process is a crucial element of ethical genetics research, says Dr. McBride. For the study, he and his colleagues collected anonymous questionnaires from families that had consented between 2004 and 2008 to the storage and analysis of their children's DNA samples in a genetic biobank. The biobank was created to study the genetics of congenital malformations of the heart's left ventricular outflow tract.

The researchers found that, while parents had a good grasp of some consent concepts, other important information was poorly understood. For example, parents understood that their consent was voluntary and the samples would be used for research on the causes of heart defects. However, they overestimated how the research might benefit their child and undervalued the risks of enrolling in the study.

"Although the primary purpose of the study was to obtain biologic samples for future testing, parents did not understand that their child's samples would be stored indefinitely," Dr. McBride says. When both parents were involved in the decision, they displayed a better overall understanding of the true nature of the consent agreement than parents making the decision alone.

Most families participating in research are involved with clinical trials, which involve a different set of expectations and agreements during the consent process than genetic sampling. "Participants in a clinical trial are enrolled in a treatment and are followed over time with the expectation that they may receive a new and better therapy," Dr. McBride says. In a biobank study, however, participants cannot typically expect any personal benefit or even any follow-up.

This is starting to change, however. Some new models for biobank studies are more inclusive of the research subject, offering on-going contact and return of results that may impact their health, says Dr. McBride, who also is an assistant professor in pediatrics at The Ohio State University College of Medicine. "To provide individuals and families with adequate knowledge to participate in genetic research, informed consent delivery must evolve, especially as the demand for genomic data increases."

Interventions to improve understandingoften incorporating visual aids and video consentingprovide promising results, but few studies demonstrate their effectiveness for biobanking consent. Furthermore, there is currently no movement to adopt these techniques widely, something Dr. McBride says warrants consideration. "The focus of researchers should shift to how to improve the informed consent process through alternative methods of consent delivery, so that consenting families are truly informed partners in genetic research."


Contact: Gina Bericchia
Nationwide Children's Hospital

Related medicine news :

1. Parents of Kids With Cancer No More Likely to Break Up
2. Gay Adults Rejected by Parents Have Worse Health, Study Finds
3. Nearly 1 in 4 grandparents store prescription medicines where children can easily find them
4. A physicians guide for anti-vaccine parents
5. Parents poor math skills may lead to medication errors
6. Friends Parents Can Sway Teens Odds for Drinking, Smoking
7. Study: Kids Who Sleep in Parents Bed Less Likely to Be Overweight
8. Many Parents of Kids With Autism Dont Put Faith in Pediatricians
9. Pediatric epilepsy impacts sleep for the child and parents
10. Parents are happier than non-parents, new research suggests
11. Parents Often Lose Sleep Over Childs Epilepsy, Study Finds
Post Your Comments:
(Date:6/25/2016)... (PRWEB) , ... June 25, 2016 , ... ... athletes and non-athletes recover from injury. Recently, he has implemented orthobiologic procedures as ... City area —Johnson is one of the first doctors to perform the treatment. ...
(Date:6/25/2016)... ... June 25, 2016 , ... Conventional wisdom preaches the benefits ... terms of the latter, setting the bar too high can result in disappointment, perhaps ... slow progress toward their goal. , Research from reveals that ...
(Date:6/24/2016)... Marne, Michigan (PRWEB) , ... June 24, 2016 , ... ... To deal with these feelings, many turn to unhealthy avenues, such as drug or ... Center of Marne, Michigan, has released tools for healthy coping following a traumatic event. ...
(Date:6/24/2016)... ... ... was in a crisis. Her son James, eight, was out of control. Prone to extreme ... “When something upset him, he couldn’t control his emotions,” remembers Marcy. “If there was ... other children and say he was going to kill them. If we were driving ...
(Date:6/24/2016)... Fla. (PRWEB) , ... June 24, 2016 , ... Global ... Trend magazine’s 2016 Legal Elite. The attorneys chosen by their peers for this recognition ... Florida. , Seven Greenberg Traurig Shareholders received special honors as members of this year’s ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... June 24, 2016  Global Blood Therapeutics, Inc. (GBT) ... developing novel therapeutics for the treatment of grievous ... the closing of its previously announced underwritten public ... the public offering price of $18.75 per share. ... offered by GBT. GBT estimates net proceeds from ...
(Date:6/24/2016)... 24, 2016 Research and ... "Structural Electronics 2015-2025: Applications, Technologies, Forecasts" report ... In-Mold Electronics, Smart Skin, Structural Health Monitoring, ... Structural electronics involves electronic and/or electrical components ... replacing dumb structures such as vehicle bodies or ...
(Date:6/24/2016)... ANDOVER, Mass. and SAN CLEMENTE, Calif. ... California -based mobile pulmonary function testing company, is now ... portable PFT devices developed by ndd Medical Technologies , Inc. ... PFT testing done in hospital-based labs.  Thanks to ndd,s EasyOne PRO ... CA , can get any needed testing done in the ...
Breaking Medicine Technology: