Navigation Links
Gulf grows between research practice and participant preferences in genetic studies
Date:1/20/2011

for other studies. Recent research at Group Health Cooperative, a non-profit Seattle health system, has offered insight into study participant views. Group Health patients enrolled in the Adult Changes in Thought (ACT) study, a long running joint UW and Group Health project on brain aging, were asked if their ACT data could be submitted to the database of Genotypes and Phenotypes (dbGaP). Telephone interviews with a sample of those who granted such permission showed that while they were willing to have their information used in this way, this didn't mean that they had no interest in learning how and by whom the data might be used.

"What was really important to participants in the cases we mention," said Susan Brown Trinidad, research scientist in the UW Department of Bioethics and Humanities, "wasn't solely driven by the desire for control, or the chance to say no to certain kinds of studies. Rather, participants viewed being asked as an important demonstration of the researchers' respect and appreciation."

When contact with research volunteers is feasible and practical, then the extra work to re-engage them for re-use of data can be a valuable investment in science.

"Our experience with the ACT study," said Dr. Eric B. Larson, executive director of Group Health Research Institute, "showed informing subjects and seeking additional consent was worthwhile. Every time we share information and involve research subjects, we build on the trusting relationship that ultimately improves our research and the value our research has for participants, the scientific community, and the public. Through trusting relationships, research can inform patient care, while patient participation keeps informing research."

UW bioethicist, physician, and genetic researcher Wylie Burke has served for many years as a national advisor on the legal, ethical and social implications of genomic research.

"The good news here," she said, "is t
'/>"/>

Contact: Leila Gray
leilag@u.washington.edu
206-685-0381
University of Washington
Source:Eurekalert  

Page: 1 2 3 4

Related biology news :

1. NIH Clinical and Translational Science Consortium grows to 39 members
2. MIT: New tissue scaffold regrows cartilage and bone
3. Plastic that grows on trees, part two
4. Vermicompost from pig manure grows healthy hibiscus
5. Texas Childrens Cancer Center first in Texas to magnetically lengthen nine-year-olds leg as she grows
6. New biotech company grows from MCG diabetes and genomic research
7. Researchers note differences between people and animals on calorie restriction
8. New study indicates link between weight gains during pregnancy and dieting history
9. University professor stresses links between US Navy sonar and whale strandings
10. New book rethinks the relationship between sulfur and crops
11. Stabilizing force for good communication between neurons and muscle cells found
Post Your Comments:
*Name:
*Comment:
*Email:
Related Image:
Gulf grows between research practice and participant preferences in genetic studies
(Date:8/21/2014)... BOSTON -- Nine researchers from Beth Israel ... included in "The World,s Most Influential Scientific Minds ... from Thomson Reuters ScienceWatch, a web resource for science ... scientists recognized as among the most influential "are performing ... to the advancement of their science," according to a ...
(Date:8/21/2014)... window? It consists of radiations in the 3.3 to ... water in biological tissues. New theoretical findings show that ... water window. These could be the basis of an ... biological samples or to be used in high-precision spectroscopy. ... needed to efficiently generate the harmonic radiationswhich are multiples ...
(Date:8/21/2014)... feeding tube connectors, designed by an international standards process, ... , According to an invited review published in the ... ( NCP ), the official journal of the American ... connectors will greatly reduce the occurrence of misconnection that ... Small-bore connectors, which are used to join medical devices, ...
Breaking Biology News(10 mins):BIDMC researchers named among 'the most influential scientific minds' 2BIDMC researchers named among 'the most influential scientific minds' 3Water window imaging opportunity 2New feeding tube connectors will improve patient safety 2
... A new study by top global fisheries experts presents ... The analysis of 61 species of "scombrids," which include ... include swordfish and marlins, classified seven as threatened with ... Red List of Threatened Species. University of Miami ...
... The Northwest Forest Plan enacted in 1993 was designed ... northern spotted owl, but researchers conclude in a new study ... carbon sequestration on public lands. When forest harvest levels ... after passage of this act, they became a significant carbon ...
... NEW YORK (July 22, 2011)A genetic study ... that the big-horned animals travel extensively across the ... to Wildlife Conservation Society researchers with the support ... Using a non-invasive technique that extracts DNA from ...
Cached Biology News:Double jeopardy: Tuna and billfish 2Northwest Forest Plan has unintended benefit - carbon sequestration 2World's largest sheep an international traveler 2World's largest sheep an international traveler 3
(Date:8/22/2014)... 2014 “Our nation's healthcare system ... national disgrace. Furthermore, every governmental and professional entity ... deplorable state of unorganized dysfunction shares in that ... merely serve as a device to use in ... failure(s) that have accumulated through the years leading ...
(Date:8/21/2014)... research team including DESY scientists has observed tiny quantum ... reports in the journal Science that the ... the nanodroplets. It is the first time that the ... samples of what is known as superfluid helium, have ... best expectations," says Andrey Vilesov of the University of ...
(Date:8/21/2014)... COLD SPRING, N.Y. , Aug. 21, 2014 ... today the launch of their Nutraceutical "TELO-20 for ... first and only Telomere-lengthening supplement in the world ... the ends of every chromosome in the body. ... the world,s leading experts in Telomere Science and ...
(Date:8/21/2014)... , Aug. 21, 2014 ... Immune Pharmaceuticals Inc., a biotechnology company, on its ... Immune previously traded on OTCQX®, the best marketplace ... OTC Markets Group. Logo - http://photos.prnewswire.com/prnh/20110118/MM31963LOGO ... on the successful execution of its growth strategy ...
Breaking Biology Technology:5 Great Mistakes in Healthcare and How to Fix Them by Dr. Ira Williams 2Scientists observe quantum vortices in cold helium droplets 2Telomere Biosciences Announces: TELO-20 for Dogs, the World's First Telomere-Lengthening Supplement for Dogs, to Promote Healthy Aging and Longevity 2Telomere Biosciences Announces: TELO-20 for Dogs, the World's First Telomere-Lengthening Supplement for Dogs, to Promote Healthy Aging and Longevity 3OTC Markets Group Congratulates Immune Pharmaceuticals on NASDAQ Listing 2
... part of its ongoing efforts to improve the quality ... diagnosed with scoliosis, Axial Biotech, Inc., a company revolutionizing ... today announced that it has signed a multi-year agreement ... The agreement focuses on providing access to ...
... 2011 ,   Amsterdam ... human gene therapy, today announced the appointment of,Dr. Carlos ... AMT more than 25 years of pharmaceutical industry experience,most ... approvals at the European Medicines Agency (EMA),and U.S. Food ...
... Nottingham and using nanotechnology 100,000 times smaller than the thickness ... the vast energy of the Sun to produce clean fuel. ... Society,s annual Summer Science Exhibition which opens ,today [5 July ... have already found a way to produce hydrogen from water. ...
Cached Biology Technology:Axial Biotech Signs Agreement With Shriners Hospital for Children 2Axial Biotech Signs Agreement With Shriners Hospital for Children 3Amsterdam Molecular Therapeutics Appoints Dr. Carlos R. Camozzi as Chief Medical Officer 2Amsterdam Molecular Therapeutics Appoints Dr. Carlos R. Camozzi as Chief Medical Officer 3Putting sunshine in the tank 2
ABCA1 Immunogen: Mouse ABCA1-expressing HeLa stable transfectants. Storage: -20 C, Avoid Freeze/Thaw Cycles...
Goat polyclonal to SART3 ( Abpromise for all tested applications). Antigen: Synthetic peptide: MSNADFAKLFLRK, corresponding to C terminal amino acids 951-963 of Human SART3 Entrez Gene ID: 9...
Hamartin/TSC1 (1B2) Mouse mAb Ship: Hot Store: -20 C...
synaptotagmin XIV-like [Source:RefSeq_peptide;Acc:NP_114120] Antigen: Recombinant Protein Epitope Signature Tag (PrEST)....
Biology Products: