Oregon Public Wants Greater Control Over Genetic Material
Oregon Public Wants Greater Control Over Genetic Material
PORTLAND, OR -- September 19, 2002 -- Geneforum, a non-profit organization based in Portland, OR, today announced the results of a statewide telephone survey indicating that most of the state's citizens would like to retain control over the use of their genetic material -- even when offered assurances that there's no way for the information to be traced back to original donors.
"Generally, the removal of identifiable personal data is seen by lawmakers as the key issue in these matters," said Dr. Gregory L. Fowler, executive director of Geneforum. "That is, in order to convince people that they can safely relinquish blood or tissue samples to genetic researchers, it's usually considered sufficient to simply offer assurances that all personal identifiers will be removed. The results from this survey challenge that assumption by showing that people want to exercise even broader control over how their genetic material is to be used. Geneforum will be sharing this data with Oregon lawmakers to help inform legislation on genetic privacy concerns here in Oregon as well as in other states."
Geneforum is working closely with the state Advisory Committee on Genetic Privacy and Research to provide the Oregon legislature with reports on public opinions and values regarding the use of genetic material in research. Geneforum's role in this process is to help the committee gather public input using a variety of strategies, including focus groups, Internet discussions, talk radio, and public opinion polling.
"Geneforum played a key role in getting language inserted in Oregon's Senate Bill 114 that mandated the creation of an advisory committee that would elicit public input within the fields of genetic privacy and research," said Senator David Nelson, Oregon legislator and advisory committee member. "Public policy decisions regarding genetic research in the state would be well advised to take these latest findings of Geneforum into account."
The sample size for the survey was 500. Respondents were age 18 and over and were randomly selected from the state's general population. Respondents in each age group were representative of the state's general population at a 95 percent confidence level.
Comprehensive results of the survey, conducted by Davis, Hibbitts & McCaig, Inc., a Portland-based research and public opinion firm are available at the Geneforum website.
Press
PORTLAND, OR -- September 19, 2002 -- Geneforum, a non-profit organization based in Portland, OR, today announced the results of a statewide telephone survey indicating that most of the state's citizens would like to retain control over the use of their genetic material -- even when offered assurances that there's no way for the information to be traced back to original donors.
"Generally, the removal of identifiable personal data is seen by lawmakers as the key issue in these matters," said Dr. Gregory L. Fowler, executive director of Geneforum. "That is, in order to convince people that they can safely relinquish blood or tissue samples to genetic researchers, it's usually considered sufficient to simply offer assurances that all personal identifiers will be removed. The results from this survey challenge that assumption by showing that people want to exercise even broader control over how their genetic material is to be used. Geneforum will be sharing this data with Oregon lawmakers to help inform legislation on genetic privacy concerns here in Oregon as well as in other states."
Geneforum is working closely with the state Advisory Committee on Genetic Privacy and Research to provide the Oregon legislature with reports on public opinions and values regarding the use of genetic material in research. Geneforum's role in this process is to help the committee gather public input using a variety of strategies, including focus groups, Internet discussions, talk radio, and public opinion polling.
"Geneforum played a key role in getting language inserted in Oregon's Senate Bill 114 that mandated the creation of an advisory committee that would elicit public input within the fields of genetic privacy and research," said Senator David Nelson, Oregon legislator and advisory committee member. "Public policy decisions regarding genetic research in the state would be well advised to take these latest findings of Geneforum into account."
About the Survey
People were asked whether they agreed with allowing researchers to use blood or other tissue samples as long as it would not be possible to identify the person from whom the sample came. More than two thirds (69 percent) of those polled considered it important to be able to refuse permission. Nearly three-quarters (73 percent) of all respondents indicated they would want some sort of notification that their blood sample might be used in research, even when personal information had been removed. And well over half (59 percent) wanted the opportunity to approve or refuse each potential research application of their blood or tissue samples.The sample size for the survey was 500. Respondents were age 18 and over and were randomly selected from the state's general population. Respondents in each age group were representative of the state's general population at a 95 percent confidence level.
Comprehensive results of the survey, conducted by Davis, Hibbitts & McCaig, Inc., a Portland-based research and public opinion firm are available at the Geneforum website.