Social Issues Associated with Occupational Health Studies

W. G. Tankersley, D. Cragle

Oak Ridge Associated Universities

Presented at

American Industrial Hygiene Conference and Exposition

New Orleans, LA

June 5, 2001

Acknowledgements

• ORAU staff– Oak Ridge, Tennessee– Arvada, Colorado

• DOE overseers• DOE contractors staff• Participants

Contacts

• Donna Cragle – Oak Ridge, TN – 865/576-2866• Bill Tankersley – Oak Ridge, TN – 865/576-3141• Duane Hilmas – Arvada, CO – 303/423-9585• Bill Stange – Arvada, CO – 303/423/9585• Elizabeth White – Washington, DC – 301/903-7582• Paul Wambach – Washington, DC – 301/903-7373

Goals of Medical Research

• Ideally– No harm to participants– Measurable benefits to participants and/or

others– Uncompromised researcher integrity– Results add to scientific knowledge

• Achievable– Some fraction of ideal

History

• Health studies marked by– Study topics chosen by researchers– Experimental design and protocol determined by

researchers– Participation determined by employer

management– Little/no input by participants– Results reported in scientific journals– Little direct reporting to participants– Little feedback received by participants

Resulting Social Issues/Problems

• Physical abuse of participants• Misuse or abuse of information• Negative repercussions from study findings– Employee discrimination– Loss of job– Loss of insurability

• Lack of communication– Perception of deception by researchers– Guinea pig syndrome

Negative Effects on Research

• Lack of participation• Lack of cooperation• Data collection handicapped• Less than optimal results– Insignificance– Bias– Incompletion of study

Perspectives/Goals/Requirements of Researchers versus Participants

• Researcher

– Focus on population

– Bound by protocol

– Future oriented

– Eager to disseminate information

– Results = End

• Participant

– Focus on individual

– Personal health oriented

– Present oriented

– Concerned about privacy

– Results = Action

Addressing of Social Issues

• Recognition of participants rights– Institutional Review Board approval– Voluntary participation

• Involvement of participants– Description of methods and goals of study– Solicitation of stake-holders input

• Communication with all participating members– Reporting of study progress and findings– Acknowledgement/response to participant

feedback

ORAU-Specific Actions

• Arrange onsite employee information meetings

• Participate in support groups

• Provide participant question/response phone line

• Assure participants are informed

• Maintain researcher integrity

• Involve stakeholders in protocol development for

new work

Future Issues

• Reporting of findings to management– Advantages– Disadvantages– Problems

• Effects of results on employment• Genetic screening• Insurability• Compensation

Why be concerned?

• Right thing to do• Law• Scientific benefit• Litigation

Contacts

• Donna Cragle – Oak Ridge, TN – 865/576-2866• Bill Tankersley – Oak Ridge, TN – 865/576-3141• Duane Hilmas – Arvada, CO – 303/423-9585• Bill Stange – Arvada, CO – 303/423/9585• Elizabeth White – Washington, DC – 301/903-7582• Paul Wambach – Washington, DC – 301/903-7373