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Research Center

Protecting my Confidentiality

12/02/2011

Question:

If I participate in a research study how can I be sure my employer won`t find out?

Answer:

There are several ways to ensure a research volunteer's information remains confidential. First, in order for the research to be approved, the IRB, institutional review board, determines that, when appropriate, there are adequate provisions to protect the privacy of subjects and to maintain the confidentiality of data. To learn more please review the IRB Guidebook published by the The Office for Human Research Protections, a division of the Department of Health and Human Services.

Privacy can be defined in terms of the volunteer having control over the extent, timing, and circumstances of sharing oneself (physically, behaviorally, or intellectually) with others. Privacy is a right and can be violated.

Confidentiality pertains to the expectation that information an individual has disclosed in a relationship of trust will not be shared to others in ways that are inconsistent with the understanding of the original disclosure without permission. Confidentiality is an agreement and can be breached.

As far as your employer finding out you are a part of a research study, the consent process, documented by the consent form, will outline what will be done with the information you share as part of the research. How the information will be kept confidential is part of the research approval process. The ways in which data will be used and made available to others is part of the agreement researchers make with study participants, and those ways must be described during the informed consent process.

While going through the consent process, ask the research team:

At the very core of research is the need to keep volunteers safe, and one safety is to protect the volunteer's privacy and confidentiality. By taking steps to ensure a research volunteer's confidentiality, information they have shared as part of their research participation will not be disclosed without their permission. Bottom line is employers, families, friends - or anyone else for that matter - do not find out that someone is taking part in a study unless the volunteer wishes to share that information.

For more information:

Go to the Research Center health topic, where you can:

Response by:

Mary Ellen Lawless, MA, RN Mary Ellen Lawless, MA, RN
Research Nurse
School of Medicine
Case Western Reserve University