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
'/>"/>

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

Page: 1 2

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:5/4/2015)... HHT is a rare but cruel ... it can have seemingly mild symptoms like frequent nosebleeds, ... Hereditary Hemorrhagic Telangiectasia (HHT) is a hereditary disorder resulting ... capillary connections between an artery and a vein. These ... but may also be present in the lungs, brain ...
(Date:5/4/2015)... New York (PRWEB) May 04, 2015 ... as $2.4 billion to settle thousands of Actos lawsuits ... diabetes medication increases the risk that a patient will ... on April 28th, if 95% of those eligible for ... resolve nearly 9,000 bladder cancer cases currently pending in ...
(Date:5/4/2015)... (PRWEB) May 04, 2015 “ LiveSchool ... monthly AppWatch, which takes a look at the latest ... and Windows. Joe Toohey, the host of AppWatch and ... viewers how this application allows teachers to reward students ... than some realize, especially in the classroom. And ...
(Date:5/4/2015)... May 04, 2015 Baptist Medical ... Stroke Association’s Get With The Guidelines®-Stroke Gold Plus ... Honor Roll. The award recognizes the hospital’s commitment ... the most appropriate treatment according to nationally recognized, ... , To receive the Gold Plus Quality Achievement ...
(Date:5/4/2015)... Ticket Down is a reputable source for authentic ... While the World Cup is the most known soccer ... the International Champions Cup is one of the biggest tournaments ... record for soccer in the United States set when Manchester ... University of Michigan. This year, the defending champion Manchester United ...
Breaking Medicine News(10 mins):Health News:Frequent Nosebleeds Can Be a Sign of a Rare Undiagnosed Disease - Cure HHT 2Health News:Frequent Nosebleeds Can Be a Sign of a Rare Undiagnosed Disease - Cure HHT 3Health News:Actos Lawsuit Settlement: Takeda Pharmaceutical Co. to Pay As Much As $2.4 Billion to Resolve Claims Alleging Actos Causes Bladder Cancer 2Health News:Actos Lawsuit Settlement: Takeda Pharmaceutical Co. to Pay As Much As $2.4 Billion to Resolve Claims Alleging Actos Causes Bladder Cancer 3Health News:An Application for Teachers to Reward Students with Good Behavior Was Featured on NewsWatch Television 2Health News:Baptist Medical Center Jacksonville Receives Top Honor for Stroke Care 2Health News:Baptist Medical Center Jacksonville Receives Top Honor for Stroke Care 3Health News:Baptist Medical Center Jacksonville Receives Top Honor for Stroke Care 4Health News:Cheap 2015 International Champions Cup (ICC) Tickets: Ticket Down Slashes Ticket Prices on International Champions Cup (ICC) Presale Tickets 2Health News:Cheap 2015 International Champions Cup (ICC) Tickets: Ticket Down Slashes Ticket Prices on International Champions Cup (ICC) Presale Tickets 3Health News:Cheap 2015 International Champions Cup (ICC) Tickets: Ticket Down Slashes Ticket Prices on International Champions Cup (ICC) Presale Tickets 4
... , ... Strong Backbone for Victory: Cortical Concepts Wins ,Wharton Business Plan Competition Michelson Grand ... “People’s Choice” Award with Private Sales for Co-eds, , ... Philadelphia, PA (PRWEB) April 29, ...
... ... Science and Technology Policy, will bring together leaders in open innovation , ... Washington, DC (Vocus) -- This ... Grant Making”, a public-private strategy session jointly hosted by the White House Office on ...
... Athens, Ga. A team of researchers at the University ... the next five years from the National Institutes of Health ... may prevent drug abuse relapse. "Drug abuse is ... aspects of treating addiction is preventing the relapse caused by ...
... ... awarded a $4.2 million grant from the Ontario Ministry of Research and Innovation’s Biopharmaceutical ... expansion of its bio-manufacturing facility in Mississauga, Ontario, Canada. , ... Toronto, ON (Vocus) April 30, 2010 -- ...
... how the brain communicates with limbs, researcher says , THURSDAY, ... a phenomenon known as mirror movements has been identified by ... move one side of their body without moving the other. ... the same movement occurs unintentionally in the left hand. , ...
... ... has developed a unique caregiver testing program to measure the preparedness of home care ... ... 29, 2010 -- The National Private Duty Association (NPDA), a non-profit organization comprised of ...
Cached Medicine News:Health News:Wharton Business Plan Competition Michelson Grand Prize Winners Announced 2Health News:Wharton Business Plan Competition Michelson Grand Prize Winners Announced 3Health News:Prize4Life Featured in Major Innovation/Prize National Conference 2Health News:Prize4Life Featured in Major Innovation/Prize National Conference 3Health News:UGA, Emory to study how exercise may prevent drug abuse relapse 2Health News:Therapure Awarded $4.2 Million BIP Grant from the Ontario Government 2Health News:Scientists Find Cause of Involuntary Mirror Movements 2Health News:Association Advocates Testing for Home Care Workers 2
(Date:5/4/2015)... Pa. , May 4, 2015 DePuy ... Dura Repair, the first commercially available biosynthesized dural ... Synthes CMF is a part of the DePuy Synthes ... is a tissue membrane that covers and protects the ... be cut to allow surgeons to access the brain. ...
(Date:5/4/2015)... ANGELES , May 4, 2015 Former ... FOX News online last week where he discussed Theradome™, ... to be FDA-cleared. The FOX segment shows firsthand how, ... and affordable hair loss solution that will not require ... stimulates the mitochondria at the base of the hair ...
(Date:5/4/2015)... TORONTO , May 4, 2015 /PRNewswire/ ... announced that it intends to dividend to its stockholders ... of a definitive licensing agreement to license its RapidMist™ ... ) (OTCQB:SMFI). As announced on April 23, ... in respect of the licensing of its RapidMist™ buccal ...
Breaking Medicine Technology:DePuy Synthes CMF Launches First Biosynthesized Cellulose-Based Dural Replacement For Neurosurgery 2DePuy Synthes CMF Launches First Biosynthesized Cellulose-Based Dural Replacement For Neurosurgery 3FOX News Features Theradome as the Take-Home Solution to Tackle Baldness 2Generex Announces Intention to Dividend a Portion of Anticipated SMFI Securities to Its Stockholders upon a Reverse Stock Split 2Generex Announces Intention to Dividend a Portion of Anticipated SMFI Securities to Its Stockholders upon a Reverse Stock Split 3Generex Announces Intention to Dividend a Portion of Anticipated SMFI Securities to Its Stockholders upon a Reverse Stock Split 4Generex Announces Intention to Dividend a Portion of Anticipated SMFI Securities to Its Stockholders upon a Reverse Stock Split 5
... Aug. 21 Genetic testing can be,used to ... anticoagulant, according to research published in the,September 1, ... American Society of,Hematology. This result represents one of ... to guide personal medical care., Because individuals ...
... Randomized, Double-Blind Study Targets Biomarker-Defined Population, ... (Nasdaq: GNTA ) announced that the ... confirmatory Phase 3 trial of Genasense,(oblimersen sodium) ... as,AGENDA, is a randomized, double-blind, placebo-controlled study ...
Cached Medicine Technology:Genetics Determine Optimal Drug Dose of Common Anticoagulant 2Genetics Determine Optimal Drug Dose of Common Anticoagulant 3Genta Initiates Phase 3 AGENDA Trial of Genasense(R) for Patients with Advanced Melanoma 2Genta Initiates Phase 3 AGENDA Trial of Genasense(R) for Patients with Advanced Melanoma 3Genta Initiates Phase 3 AGENDA Trial of Genasense(R) for Patients with Advanced Melanoma 4Genta Initiates Phase 3 AGENDA Trial of Genasense(R) for Patients with Advanced Melanoma 5
... a national reference laboratory and a worldwide ... ARUP offers an extensive test menu of ... clinical and anatomic pathology. Owned by the ... more than half of the nation's university ...
... national reference laboratory and a worldwide leader ... offers an extensive test menu of highly ... and anatomic pathology. Owned by the University ... than half of the nation's university teaching ...
... Laboratories is a national reference laboratory and ... and development. ARUP offers an extensive test ... tests in clinical and anatomic pathology. Owned ... clients include more than half of the ...
... ARUP Laboratories is a national reference laboratory ... research and development. ARUP offers an extensive ... medical tests in clinical and anatomic pathology. ... Laboratories' clients include more than half of ...
Medicine Products: