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:6/25/2016)... ... June 25, 2016 , ... First Choice Emergency Room , the ... Ogunleye, as the Medical Director of its new Mesquite-Samuell Farm facility. , “We ... new Mesquite location,” said Dr. James M. Muzzarelli, Executive Medical Director of First Choice ...
(Date:6/25/2016)... ... June 25, 2016 , ... ... non-athletes recover from injury. Recently, he has implemented orthobiologic procedures as a method ... —Johnson is one of the first doctors to perform the treatment. Orthobiologics are ...
(Date:6/25/2016)... ... June 25, 2016 , ... Conventional wisdom preaches the benefits of moderation, whether ... latter, setting the bar too high can result in disappointment, perhaps even self-loathing. However, ... their goal. , Research from PsychTests.com reveals that behind the tendency ...
(Date:6/24/2016)... ... June 24, 2016 , ... Those who have experienced traumatic ... many turn to unhealthy avenues, such as drug or alcohol abuse, as a coping ... released tools for healthy coping following a traumatic event. , Trauma sufferers tend to ...
(Date:6/24/2016)... , ... June 24, 2016 , ... Marcy was in a crisis. Her son James, ... out at his family verbally and physically. , “When something upset him, he couldn’t control ... use it. He would throw rocks at my other children and say he was going ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... , June 24, 2016 The Academy of ... recommendations that would allow biopharmaceutical companies to ... entities that make formulary and coverage decisions, a move ... of new medicines. The recommendations address restrictions ... appear on the drug label, a prohibition that hinders ...
(Date:6/24/2016)... PUNE, India , June 24, 2016 ... "Pen Needles Market by Type (Standard Pen Needles, Safety ... 12mm), Therapy (Insulin, GLP-1, Growth Hormone), Mode of Purchase ... published by MarketsandMarkets, This report studies the market for ... is expected to reach USD 2.81 Billion by 2021 ...
(Date:6/23/2016)... -- MedSource announced today that it has selected Datatrial,s ... choice.  This latest decision demonstrates MedSource,s commitment to ... by offering a state-of-the-art electronic data capture (EDC) ... the EDC platform of choice in exchange for ... long been a preferred EDC platform by our ...
Breaking Medicine Technology: