Navigation Links
Embarrassing illnesses no bar to information sharing

People with potentially 'stigmatizing' medical conditions are just as likely as those with less stigmatizing illnesses to allow their personal information to be used for health research. A new study, published in the open access journal BMC Medical Ethics, found that the purpose of the research and the type of information to be collected were more important in determining patients' consent choices. In particular, they were very wary of allowing their personal information to be put to commercial use.

Donald Willison, Senior Scientist with the Ontario Agency for Health Protection and Promotion, Canada, led a team of researchers who surveyed 1137 people who either had potentially stigmatizing conditions (HIV, alcoholism, chronic depression or lung cancer) or lower-stigma conditions (hypertension, breast cancer or diabetes), as well as a reference group of healthy people. They presented the subjects with a series of situations and asked them to indicate how much control they would want over the use of their personal information in each case.

According to Willison, "Across scenarios, consent choice profiles were very similar for all health conditions. They were also very similar to the profile of the reference group. These findings surprised us. It may be that, across health conditions, those who were more privacy-sensitive were less inclined to participate in the study, or it may just be that, where people believe that their information will be put to constructive use, people are equally willing to allow their information to be used, regardless of their health condition."

The researchers found people wanted more control in research scenarios involving profit or those that linked health information with income, education, or occupation. Focus groups were held with some of the respondents where they were asked to explain their choices. One participant form the HIV group said,

"I think the simple answer is that physical tissue sample is just a piece of what you are, what you might bewhere the rest of the information [education, income, and employment] is more of who you are. People are more afraid of the revelation of who you are than what you are."

Speaking about the results, Willison said, "Individuals should be offered some choice in use of their information for different types of health research. In some cases, like population health research, that may be limited to selectively opting-out of research projects. In other cases, like linkage of biological samples with one's health information, the process would likely continue to require an opting in, perhaps through a broad consent for a range of uses. Just what choices would be offered would have to be determined through further engagement with the public and other stakeholders. Many questions remain, including how best to capture the opinions of those who are more privacy sensitive."


Contact: Graeme Baldwin
BioMed Central

Related medicine news :

1. Excruciatingly Embarrassing Moment for The Medical Board of California: Complete Meltdown of the Friday, April 25th Quarterly Meeting: by T. L. Kittle
2. UCLA Research Shows Dramatic Savings for Medicaid When Head Start Parents Learn to Care for Kids Illnesses
3. U.S. Food Safety: Foodborne Illnesses a Menu for Disaster
4. WebTribes Offers Online Home for Those with Illnesses
5. NARSADs 5th Annual Mission Possible Symposium Offers Insight to PTSD and Other Mental Illnesses
6. Fort Dodges Mosquito Shot Offers Convenient Protection Against Dangerous Mosquito-Borne Illnesses
7. Admission-Day Crowding May Increase Hospital Stay for Children With Less Complicated Illnesses
8. Foodborne Illnesses Remain Constant in U.S.
9. NARSAD researchers identify specific genes and family traits linked to mental illnesses
10. 2008 NAC Kids Olympics Celebrates the Achievements and Persevering Spirits of Hundreds of Children with Disabilities and Chronic Illnesses on Saturday, June 21, 2008 at Riverbank State Park
11. RNA engineering to combat series of illnesses wins Kaye Award for Hebrew University dean
Post Your Comments:
(Date:12/1/2015)... ... December 01, 2015 , ... CloudLIMS today ... Golden Bridge Business Awards under the New Products and Services category for its ... sample management software that helps labs organize data and track samples ...
(Date:12/1/2015)... ... 01, 2015 , ... The workstation boundaries for imaging specialists ... Systems launches MED-TAB™ -- the world’s first portable DICOM-calibrated medical image display, debuting ... December 4, 2015. , MED-TAB is expected to change teleradiology because for ...
(Date:12/1/2015)... ... December 01, 2015 , ... ... of adjunctive imaging is the focus of numerous abstracts accepted for presentation here, ... 4, 2015. Nine abstracts highlight the use of Volpara Solutions’ quantitative breast ...
(Date:12/1/2015)... ... December 01, 2015 , ... For the millions of people ... Incorporated has launched the VaPro Plus Pocket™ touch free hydrophilic intermittent catheter. “Hollister ... free catheter portfolio,” said Michael Gresavage, Vice President North America. "We designed our ...
(Date:12/1/2015)... ... 01, 2015 , ... SAN FRANCISCO, Calif. (December 1, 2015) ... has awarded Education and Developmental Therapies (EDT), an Applied Behavior Analysis (ABA) service ... special needs providers that excel in synthesizing the areas of clinical quality, staff ...
Breaking Medicine News(10 mins):
(Date:12/1/2015)... WellStar Health System has signed a definitive ... Tenet Healthcare,s five metro Atlanta ... move following the conclusion of the due diligence period. ... and patient safety programs that have resulted in increased ... --> --> With ...
(Date:12/1/2015)... 1, 2015   Nottingham Spirk , a ... the publication of a free whitepaper , ... Market". The whitepaper gives medical product companies, pharmaceutical ... this lucrative segment. Nottingham Spirk ... manage their own health, save money (i.e., fewer ...
(Date:12/1/2015)... WASHINGTON , Dec. 1, 2015 A federal ... motion to dismiss a lawsuit filed by the Pharmaceutical ... Arkansas 900, a new law that forces employers ... Arkansas must now defend ... consumers," said PCMA President and CEO Mark Merritt . ...
Breaking Medicine Technology: