Navigation Links
Parents don't fully understand biobank research, study finds
Date:7/29/2013

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
Gina.Bericchia@NationwideChildrens.org
614-355-0495
Nationwide Children's Hospital
Source:Eurekalert

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:
*Name:
*Comment:
*Email:
(Date:12/7/2016)... ... 2016 , ... 1105 Media’s Live From program has been ... competition. Live From won in the Use of Social Media category. The Folio: ... undertaken by the media industry’s most innovative marketing professionals. , Conceived ...
(Date:12/7/2016)... ... 2016 , ... Gensuite is honored to be selected as ... Product Launch category. Gensuite’s entry on their EZ Scan feature detailed the tool’s ... Training Group is a professional event and training provider based in the United ...
(Date:12/7/2016)... ... ... Road To Restoration”: an informative and enlightening book for those who believe that ... “The Road To Restoration” is the creation of published author, Thomas Fitzhugh Sheets, seventy-one-year-old ... you could reach out for, and grab, on the old carousels. If you ...
(Date:12/7/2016)... ... ... Rides a Train” allows readers to tag along on a special shopping trip for ... creation of published author, Janet Morrison, who has been writing mostly poetry, essays, professional ... series is her first attempt at writing for children. Janet, Fred, and two cats ...
(Date:12/7/2016)... ... December 07, 2016 , ... Dr. Greg ... the International Probiotic Association’s Washington DC workshop on November 2nd. The conference was ... dialog regarding probiotic dietary supplement regulations. , Dr. Leyer spoke about two ...
Breaking Medicine News(10 mins):
(Date:12/7/2016)... , Dec. 7, 2016 According to responses from ... than one-third (38%) of patients with non-small cell lung cancer ... factor receptor (EGFR) genetic mutation status. The findings of the ... LBA ID #6067 #P3.02b ) at the 2016 World ... . The survey results revealed an overall ...
(Date:12/7/2016)... Conn. , Dec. 7, 2016 ... II trial in patients with unresectable malignant pleural ... survival (PFS). The data, presented at the 17 ... in Vienna , showed nintedanib ... to placebo plus pemetrexed/cisplatin, with a significantly improved ...
(Date:12/7/2016)... Today, Stock-Callers.com presents four Biotech equities ... ), Anthera Pharmaceuticals Inc. (NASDAQ: ANTH ), ProNAi ... (NASDAQ: AVXS ). From its peak in July ... reach a level equal to what it saw at the ... for the year, it has still out-performed other market sectors, ...
Breaking Medicine Technology: