Protecting Participant Confidentiality in Social Science Research

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Protecting Participant Confidentiality in Social
Science Research

• Felice J. Levine, Ph.D.
• American Educational Research Association

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ConfidentialityA Central Ingredient

• Is it always required?
• While normative for the researcher-research
  participant relationship, it is not always
  required.
• For example, 45 CFR46 says When appropriate,
  there are adequate provisions to protect the
  privacy of subjects and to maintain the
  confidentiality of data 46.111(a)(7)

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When is confidentiality NOT required?

• When rules of privacy are not provided or
  expected by custom or law
• Observation of public behavior (but a caveat for
  recording which makes permanent a naturally
  occurring situation)
• Public records
• Research participants indicate they do not want
  it. . .
• But investigators judgment should apply!

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Why is confidentiality necessary, even valuable?

• Builds trust
• Lends credibility to research enterprise
• Increases candor and thus validity of responses
• Encourages access to certain forms of data (e.g.,
  medical or employment records)
• Allows for research involving sensitive issues
• Protects participants from disclosure of
  information outside of research context

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Nature of the Research

• While much social science research, including
  educational research, is minimal risk, disclosure
  of confidential data is perhaps the primary risk.
• Breaches of confidentiality can pose risks to
  participants of social, psychological, legal, or
  financial harms
• Regardless of the level of risk, the investigator
  is obligated to honor the agreement made with the
  participant, whatever that may be.

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Links to Risk

• Level of confidentiality protections should be
  commensurate with the potential risk of harm
• Risk is not fixed ameliorating conditions or
  strategies can alter risk level
• Highly secure data protection plan can reduce
  risk of confidentiality breaches

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Investigator Responsibilities

• Consider confidentiality protection issues at all
  phases of research
• Planning
• Implementation
• Storage of data
• Publication
• Data sharing

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Investigator Responsibilities (cont.)

• Create sound data protection plan
• Determine whether identifiers are needed
• De-identify data (where necessary)
• Consider storage of data (physical and
  electronic)
• Train research team
• Destroy, in time, data or identifiers that will
  not be archived

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Other Safeguards

• Obtain legal protections where possible (e.g.,
  certificates of confidentiality)
• Secure support of host research institution
• Ask funding agency what additional mechanisms may
  be possible

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Limits to Confidentiality Protections

• By law, some states require reporting of child
  abuse
• By other ethical principles, e.g., if learn of
  health or life-threatening circumstances to
  others
• Certificates of confidentiality offered by
  federal agencies are not comprehensive
• Importance of informing participants of limits

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An Evolving Area

• National Human Research Protections Advisory
  Committee Recommendations to DHHS
• OHRP/DHHS will review recommendations and post
  guidance for IRBs and investigators

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NHRPAC Recommendations

• (1) Degree of confidentiality protection should
  be commensurate with risk, and data protection
  plan can reduce risk
• (2) OHRP should clarify what confidentiality
  certifications are available
• (3) OHRP should conduct a review of statutes and
  regulations on the topic and identify gaps

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NHRPAC Recommendations (cont.)

• (4) A clearinghouse linking information on all
  federal and state protections should be
  established
• (5) Guidance should be developed for describing
  confidentiality protections in the consent
  process, including when confidentiality cannot be
  maintained

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NHRPAC Recommendations (cont.)

• (6) Research institutions should actively support
  the investigators efforts
• (7) Guidance should be developed to ensure
  confidentiality protections are transferred when
  data are shared among investigators

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Take-Home Message

• Honor the agreement made
• with the research participant!