Informed Consent for Children in Foster Care

Usually, a child’s parent or legal guardian must be the one to give consent.
Children who are old enough to understand the study must also provide assent, meaning they agree to participate.

If two parents are available and they disagree, the child cannot take part until the disagreement is resolved.

Federal regulations require parental or guardian permission for most research involving minors unless an approved waiver applies.

Consent requirements depend on the level of risk:

• Minimal risk studies: Permission from at least one parent.
• More than minimal risk with direct benefit: Permission from at least one parent.
• More than minimal risk with no direct benefit: Permission from both parents, unless one parent is deceased, unknown, incompetent, or not reasonably available.
• Research on serious child health/welfare concerns with no direct or societal benefit: Permission from both parents.

Parents or legal guardians are still the primary decision‑makers.

This applies even when parental rights have been terminated.

If they are not available:

• Federal guidance requires a specially appointed advocate who is independent from the researcher and institution.
• Virginia does not currently have a system to appoint such advocates, meaning some foster children cannot participate in certain studies.

Yes. For certain higher‑risk categories, foster children may participate only if:

• The research relates to their experience as children in foster care, or
• The research happens in a setting where most children are not in foster care.

In these cases, an advocate for each foster child must be appointed. Because Virginia does not currently have a mechanism to appoint advocates, these types of studies are not allowed at this time.

A LAR is a person or body legally allowed to give consent for a child’s research participation.

This is usually a parent or legal guardian, but may also be another adult authorized by law or court order.

Attorneys or employees of the agency conducting the research cannot serve as LARs.

No. Foster parents cannot provide research consent.

The only exception:

If they have signed an official adoption agreement, they may make these decisions during that short transition period. 

Yes. Once an adoption agreement is in place—even before the court finalizes adoption—the adoptive parents can consent on behalf of the child.

No. Even though local DSS holds legal authority over the child, they are not considered legal guardians and cannot serve as LARs.

Case managers also cannot serve as LARs due to legal restrictions and potential conflicts of interest.

No. There is no existing process for VDSS or LDSS to designate a LAR to consent for a foster child’s participation in research.

No. They cannot give consent for decisions normally made by a parent or guardian—including research participation.

This protects families and prevents conflicts of interest.

If a child has been legally emancipated by a court, they may consent for themselves. 

Yes, if an Institutional Review Board (IRB) determines that requiring parental consent would not protect the child.

Examples include research involving:

• Sensitive topics where a parent may be a perpetrator
• Topics that could embarrass or endanger a child if a parent knew

In these cases, the IRB must put other safeguards in place to keep the child safe. 

The next steps depend on the type of decision:

• For medical care: DSS may petition the court.
• For school-based decisions like IEPs: Schools may appoint a LAR after multiple attempts to contact parents.
• For research participation:
  Courts do not handle these decisions, and Virginia has no process for appointing neutral advocates. This can limit participation until such a system exists.

Yes. Once a youth turns 18, they may consent for themselves—even if they remain in extended foster care—unless they have serious cognitive limitations.