Adolescent Capacity to Consent to Participate in Research: A Review and Analysis Informed by Law, Human Rights, Ethics, and Developmental Science
1. Introduction: Adolescence, the Need for Research, and the Question of Consent
2. Adolescence as a Key Life Stage
2.1. The Nature and Importance of Adolescence
2.2. The Recognition of Adolescence in International Policy
2.3. The Need to Engage with Adolescents as Research Participants
Greater engagement of young people, whether as consumers of health services or recipients of preventive intervention programmes, will help to ensure the relevance of interventions that set out to target this diverse population. If adolescents are given a voice by being involved in the identification of their health issues and development of appropriate solutions, they will also be more visible to their communities, stakeholders, and decision makers.
The transition through education to employment typically occurs in adolescence, allowing the acquisition of assets that will be essential for being an effective parent, including financial resources and property, and extending to physical, cognitive, social and emotional capabilities … Creating health-promoting environments for adolescents will ultimately require engagement well beyond the health sector, with education, local government, industry, religious leaders, civil society and young people themselves all essential actors. Girls and young women should undoubtedly remain a priority. However boys and young men should also be brought into focus. They have important roles in parenting that are affected by health problems that commonly emerge before conception. Their values and behaviours affect the capacities of young women to become effective mothers … Increasingly we also understand that their influence on the next generation extends to distinct biological processes that directly affect the early development of the next generation.
3. Adolescent Capacity to Consent to Participate in Research: Developmental Evidence
3.1. Concepts of Consent and Assent in the Research Context
3.2. A Developmental Perspective on Decision-Making
3.2.1. Cold and Hot Decision-Making Settings
Our review of the relevant literatures indicates that the maturation of the capacity to reason and deliberate systematically precedes, by as much as five years, the maturation of the ability to exercise self-regulation, especially in socially and emotionally arousing contexts. Differences in the timetables of these two sets of skills are consistent with findings from the field’s emerging understanding of adolescent brain maturation, which suggests that brain systems responsible for logical reasoning and basic information processing mature earlier than those that undergird more advanced executive functions and the coordination of affect and cognition. In light of this evidence, policy makers seeking guidance about the establishment or modification of chronological age boundaries should distinguish between two very different decision-making contexts: those that allow for unhurried, logical reflection and those that do not.
3.2.2. In Cold Decision-Making Settings, an Age of Autonomous Choice Aged 16
For legal matters that permit unhurried deliberation in the absence of emotional arousal, and where adolescents can be encouraged to think through their decisions before acting on them, it would be reasonable to set an age boundary around 16, because decision making in this context relies mainly on various aspects of so-called cold cognition, which is mature by this age. A partial list of legal situations for which mature cold cognitive abilities likely suffice includes voting, granting informed consent for participation in research, and making autonomous decisions in medical and legal contexts. We see no scientific reason that 16-year-olds should be prohibited from voting in political elections, serving as research subjects in studies that have been approved by institutional review boards, obtaining medical services of their choosing after consulting with a qualified health-care provider.
Given knowledge, and with appropriate safeguards, adolescents are competent to make effective decisions about almost all important matters in their lives, including their health. Legal and policy frameworks should reflect these evolving cognitive and emotional abilities with age appropriate autonomy, freedoms, and rights. Most adolescents are capable of voting from 16 years and doing so both empowers adolescents and promotes civic engagement.
3.3. Conclusion on Adolescence and Developmental Evidence on Capacity to Provide Consent
Long-standing neglect of adolescent and young adult health has left limited capacity with sectors and across service systems. There is a pressing need for investment in research, training, financing, and technical underpinnings, or progress in adolescent health and wellbeing will remain slow. … Governments must work with international development partners, including funders and global data collection systems, to collect and report on a minimum set of priority indicators of adolescent health and wellbeing. National statistics agencies should report regularly on the health, development, and wellbeing of adolescents … New approaches are particularly needed in the prevention and early intervention of mental disorders and violence. In general, there is a need to better understand what works for males and females, for different age groups of adolescents and for socially marginalised groups.
3.4. Resistance to Adolescent Autonomy
3.4.1. Impact of Requiring Active Parental Consent
3.4.2. Specific Reasons for Resistance to Autonomy
3.4.3. Conclusion: Three Barriers to Adolescent Consent
3.4.4. Current Scholarship
Our qualitative research does not aim to generalise about ages of competence but to challenge generalisations that exclude young children. Only a few cases are needed to refute the fiction that children aged under-12 or -10 or -6 years can never give informed consent. Competence is not age or ability related, but depends on each child’s experience and confidence, on the child-parents relationships and values, and whether or not they are used to sharing knowledge, risk-taking and control over decisions. Children therefore benefit when, instead of assuming incompetence, doctors start from a presumption of competence and work out with each child how willing and able they are to be informed and involved in decisions about their healthcare.
It is critically important to acknowledge that parents and other adults in gate-keeping roles have an important and positive function in protecting children from potential harm. However, they can also use their power to censor young people (Masson 2004) and may not always have the best interests of the child in mind. While the vast majority of parents care deeply and act in the interests of their children, in some instances, the assumption (usually made in gaining parental consent) that parents will always act in their children’s best interests simply may not be true, and the child’s parent may have reasons for not wanting the child to participate based on their own concerns or interests. Parents who are abusive, for example, may not consent to their child participating in particular research studies for fear of the child revealing the abuse and the researcher subsequently reporting it to authorities.
4. Legal Principles about Adolescent Capacity to Make Their Own Decisions
4.1. Legislation on the Age of Majority
Consent to research that could interfere with the integrity of a minor may be given by the person having parental authority or the tutor. A minor 14 years of age or over, however, may give consent alone if, in the opinion of the competent research ethics committee, the research involves only minimal risk and the circumstances justify it.
4.2. Legislation Setting a Lower Age of Capacity for Consent to Medical Treatment
4.3. Conclusion: Legislative Principles about Adolescent Capacity to Make Their Own Decisions
4.4. Common Law on Adolescent Capacity to Make Decisions
4.4.1. Gillick Competence
“as a matter of law the parental right to determine whether or not their minor child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed. It will be a question of fact whether a child seeking advice has sufficient understanding of what is involved to give a consent valid in law. Until the child achieves the capacity to consent, the parental right to make the decision continues save only in exceptional circumstances.”
Parental rights relate to both the person and the property of the child–custody, care and control of the person and guardianship of the property of the child. But the common law has never treated such rights as sovereign or beyond review and control. Nor has our law ever treated the child as other than a person with capacities and rights recognised by law. The principle of the law … is that parental rights are derived from parental duty and exist only so long as they are needed for the protection of the person and property of the child. The principle has been subjected to certain age limits set by statute for certain purposes: and in some cases the courts have declared an age of discretion at which a child acquires before the age of majority the right to make his (or her) own decision, But these limitations in no way undermine the principle of the law, and should not be allowed to obscure it.
I can find nothing in any of the old reported cases, except where infants of tender age or young children were involved, where the courts have found that a person under 21 years of age was legally incapable of consenting to medical treatment. If a person under 21 years were unable to consent to medical treatment, he would also be incapable of consenting to other types of bodily interference. A proposition purporting to establish that any bodily interference acquiesced in by a youth of 20 years would nevertheless constitute an assault would be absurd…the law on this point is well expressed in the volume on Medical Negligence (1957), by Lord Nathan, p. 176: ‘It is suggested that the most satisfactory solution of the problem is to rule that an infant who is capable of appreciating fully the nature and consequences of a particular operation or of particular treatment can give an effective consent thereto, and in such cases the consent of the guardian is unnecessary; but that where the infant is without that capacity, any apparent consent by him or her will be a nullity, the sole right to consent being vested in the guardian’.
4.4.2. Adoption of Gillick by Other Countries
the common law has more recently abandoned the assumption that all minors lack decisional capacity and replaced it with a general recognition that children are entitled to a degree of decision-making autonomy that is reflective of their evolving intelligence and understanding. This is known as the common law “mature minor” doctrine. … The doctrine addresses the concern that young people should not automatically be deprived of the right to make decisions affecting their medical treatment. It provides instead that the right to make those decisions varies in accordance with the young person’s level of maturity, with the degree to which maturity is scrutinized intensifying in accordance with the severity of the potential consequences of the treatment or of its refusal.
4.4.3. Conclusion: Common Law on Adolescent Capacity to Provide Consent
4.5. International Legal Instruments on Freedom of Expression
4.5.1. Major International Instruments with General Principles
- Everyone shall have the right to hold opinions without interference.
- Everyone shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of his choice.
- The exercise of the rights provided for in paragraph 2 of this article carries with it special duties and responsibilities. It may therefore be subject to certain restrictions, but these shall only be such as are provided by law and are necessary:
- For respect of the rights or reputations of others;
- For the protection of national security or of public order, or of public health or morals.
4.5.2. A Specific Principle of Freedom of Expression for Children: The UNCRC Article 12
States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.
- The child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.
- The exercise of this right may be subject to certain restrictions, but these shall only be such as are provided by law and are necessary:
- For respect of the rights or reputations of others; or
- For the protection of national security or of public order (ordre public), or of public health or morals.
- States Parties shall respect the right of the child to freedom of thought, conscience and religion.
- States Parties shall respect the rights and duties of the parents and, when applicable, legal guardians, to provide direction to the child in the exercise of his or her right in a manner consistent with the evolving capacities of the child.
- Freedom to manifest one’s religion or beliefs may be subject only to such limitations as are prescribed by law and are necessary to protect public safety, order, health or morals, or the fundamental rights and freedoms of others.
4.5.3. The Meaning of Article 12: Comment from the United Nations Committee on the Rights of the Child
The right of all children to be heard and taken seriously constitutes one of the fundamental values of the Convention … [and is] one of the four general principles of the Convention, the others being the right to non-discrimination, the right to life and development, and the primary consideration of the child’s best interests, which highlights the fact that this article establishes not only a right in itself, but should also be considered in the interpretation and implementation of all other rights.
States parties shall assure the right to be heard to every child “capable of forming his or her own views”. This phrase should not be seen as a limitation, but rather as an obligation for States parties to assess the capacity of the child to form an autonomous opinion to the greatest extent possible. This means that States parties cannot begin with the assumption that a child is incapable of expressing her or his own views. On the contrary, States parties should presume that a child has the capacity to form her or his own views and recognize that she or he has the right to express them; it is not up to the child to first prove her or his capacity.
States parties must assure that the child is able to express her or his views “in all matters affecting” her or him. This represents a second qualification of this right: the child must be heard if the matter under discussion affects the child. This basic condition has to be respected and understood broadly.
4.6. Domestic Laws
- Everyone has the right to freedom of expression. This right shall include freedom to hold opinions and to receive and impart information and ideas without interference by public authority and regardless of frontiers. This Article shall not prevent States from requiring the licensing of broadcasting, television or cinema enterprises.
- The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to such formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society, in the interests of national security, territorial integrity or public safety, for the prevention of disorder or crime, for the protection of health or morals, for the protection of the reputation or rights of others, for preventing the disclosure of information received in confidence, or for maintaining the authority and impartiality of the judiciary.
15 Freedom of expression(1) Every person has the right to hold an opinion without interference.(2) Every person has the right to freedom of expression which includes the freedom to seek, receive and impart information and ideas of all kinds, whether within or outside Victoria and whether—(a) orally; or(b) in writing; or(c) in print; or(d) by way of art; or(e) in another medium chosen by that person.(3) Special duties and responsibilities are attached to the right of freedom of expression and the right may be subject to lawful restrictions reasonably necessary—(a) to respect the rights and reputation of other persons; or(b) for the protection of national security, public order, public health or public morality.
4.7. Conclusion: International Legal Instruments on Freedom of Expression
5. Research Ethics–Guidelines and Principles
5.1. International Research Ethics Guidelines
During the Nuremberg War Crime Trials, the Nuremberg code was drafted as a set of standards for judging physicians and scientists who had conducted biomedical experiments on concentration camp prisoners. This code became the prototype of many later codes intended to assure that research involving human subjects would be carried out in an ethical manner. The codes consist of rules, some general, others specific, that guide the investigators or the reviewers of research in their work. Such rules often are inadequate to cover complex situations; at times they come into conflict, and they are frequently difficult to interpret or apply. Broader ethical principles will provide a basis on which specific rules may be formulated, criticized and interpreted.
Special provision may need to be made when comprehension is severely limited–for example, by conditions of immaturity or mental disability. Each class of subjects that one might consider as incompetent (e.g., infants and young children, mentally disabled patients, the terminally ill and the comatose) should be considered on its own terms. Even for these persons, however, respect requires giving them the opportunity to choose to the extent they are able, whether or not to participate in research.
The participation of children and adolescents is indispensable for research into diseases of childhood and conditions to which they are particularly susceptible … it is imperative to involve children and adolescents in research to study both investigational interventions for childhood conditions and established interventions in adults that are also relevant for children or adolescents, but that have not previously undergone rigorous testing in children and adolescents. Research ethics committees should recognize that research involving children or adolescents spans a wide range of individuals, from infants through to those just short of legal maturity, with very different physical, cognitive and emotional capacities. A nuanced approach to evaluating research with children and adolescents is therefore required.
Guideline 17 continues to state (p. 67):
As adolescents near the age of majority, their agreement to participate in research may be ethically (though not legally) equivalent to consent. In this situation, parental consent is ethically best considered as “co-consent” but legally, the adolescent’s agreement remains assent. If child or adolescent participants reach the legal age of majority according to applicable law and become capable of independent informed consent during the research, their written informed consent to continued participation must be sought and their decision respected.
5.2. National Research Ethics Guidelines–General Principles (USA, Canada, Australia)
Government regulations usually need some form of interpretation, but we should not tolerate a system in which lives might be lost because of an obsolete conception of human-subjects research that obstructs riskless studies aimed at improving medical practice. When research investigations are unduly restricted through requirements of regulation and review, the requirements should be adjusted.
National Research Ethics Guidelines on Adolescent Participants and Consent
Except as provided elsewhere in this policy: (1) Before involving a human subject in research covered by this policy, an investigator shall obtain the legally effective informed consent of the subject or the subject’s legally authorized representative. (2) An investigator shall seek informed consent only under circumstances that provide the prospective subject or the legally authorized representative sufficient opportunity to discuss and consider whether or not to participate and that minimize the possibility of coercion or undue influence. (3) The information that is given to the subject or the legally authorized representative shall be in language understandable to the subject or the legally authorized representative. (4) The prospective subject or the legally authorized representative must be provided with the information that a reasonable person would want to have in order to make an informed decision about whether to participate, and an opportunity to discuss that information.
Where participants are children it is important to ensure that they have the time and opportunity to access support in their decision-making, for example by discussing their choice with a trusted adult.
Where consent is sought from children it is good practice to secure permission from a responsible adult in addition to child consent.
Where participants are not literate, verbal consent may be obtained, but this should, wherever possible, include a recorded written witness sign-off. In other circumstances, for example telephone interviews, this may not be possible.
Every effort should be made to deal with consent through dialogue with both children and their parents (or legal equivalent).
Decision-making capacity refers to the ability of prospective or actual participants to understand relevant information presented about a research project and to appreciate the potential consequences of their decision to participate or not participate. … Assessing decision-making capacity is a question of determining, at a particular point in time, whether a participant (or prospective participant) sufficiently understands the nature of a particular research project, and the risks, consequences and potential benefits associated with it. One may therefore have diminished capacity in some respects but still be able to decide whether to participate in certain types of research.
Taking into account the scope and objectives of their research, researchers should be inclusive in selecting participants. Researchers shall not exclude individuals from the opportunity to participate in research on the basis of attributes such as culture, language, religion, race, disability, sexual orientation, ethnicity, linguistic proficiency, gender or age, unless there is a valid reason for the exclusion.
Researchers should not exclude children from research unless there is a valid reason for doing so. Participation of children in research is justifiable when the research objective cannot be achieved with adult participants only. When considering the inclusion of children in research, researchers and REBs shall consider a child’s stage of physical, physiological, psychological, and social development to ensure adequate protections for the child’s welfare. Where children have not yet attained the capacity to decide for themselves whether to participate in research, researchers shall seek consent from an authorized third party while ascertaining the child’s assent or dissent, as outlined in Chapter 3.
2.2.1 The guiding principle for researchers is that a person’s decision to participate in research is to be voluntary, and based on sufficient information and adequate understanding of both the proposed research and the implications of participation in it. …
2.2.2 Participation that is voluntary and based on sufficient information requires an adequate understanding of the purpose, methods, demands, risks and potential benefits of the research.
2.2.3 This information must be presented in ways suitable to each participant …
2.2.4 The process of communicating information to participants and seeking their consent should not be merely a matter of satisfying a formal requirement. The aim is mutual understanding between researchers and participants. This aim requires an opportunity for participants to ask questions and to discuss the information and their decision with others if they wish.
2.2.5 Consent may be expressed orally, in writing or by some other means (for example, return of a survey, or conduct implying consent) …
2.2.6 Information on the following matters should also be communicated to participants …
- any alternatives to participation;
- how the research will be monitored;
- provision of services to participants adversely affected by the research;
- contact details of a person to receive complaints;
- contact details of the researchers;
- how privacy and confidentiality will be protected;
- the participant’s right to withdraw from further participation at any stage, along with any implications of withdrawal, and whether it will be possible to withdraw data;
- the amounts and sources of funding for the research;
- financial or other relevant declarations of interests of researchers, sponsors or institutions;
- any payments to participants;
- the likelihood and form of dissemination of the research results, including publication;
- any expected benefits to the wider community;
- any other relevant information, including research-specific information required under other chapters of this National Statement. …
2.2.9 No person should be subject to coercion or pressure in deciding whether to participate. …
2.2.12 Where a potential participant lacks the capacity to consent, a person or appropriate statutory body exercising lawful authority for the potential participant should be provided with relevant information and decide whether he or she will participate. That decision must not be contrary to the person’s best interests.
2.2.13 Within some communities, decisions about participation in research may involve not only individuals but also properly interested parties such as formally constituted bodies, institutions, families or community elders. Researchers need to engage with all properly interested parties in planning the research.
Researchers must respect the developing capacity of children and young people to be involved in decisions about participation in research. The child or young person’s particular level of maturity has implications for whether his or her consent is necessary and/or sufficient to authorise participation. Different levels of maturity and of the corresponding capacity to be involved in the decision include:
- infants, who are unable to take part in discussion about the research and its effects;
- young children, who are able to understand some relevant information and take part in limited discussion about the research, but whose consent is not required;
- young people of developing maturity, who are able to understand the relevant information but whose relative immaturity means that they remain vulnerable. The consent of these young people is required, but is not sufficient to authorise research; and
- young people who are mature enough to understand and consent, and are not vulnerable through immaturity in ways that warrant additional consent from a parent or guardian. ….
4.2.6 Researchers should be attentive to the developmental level of children and young people when engaging them in understanding the nature and likely outcomes of research, and when judging their capacity to consent to the research.
4.2.8 An ethical review body may approve research to which only the young person consents if it is satisfied that he or she is mature enough to understand and consent, and not vulnerable through immaturity in ways that would warrant additional consent from a parent or guardian.
4.2.9 A review body may also approve research to which only the young person consents if it is satisfied that:
- he or she is mature enough to understand the relevant information and to give consent, although vulnerable because of relative immaturity in other respects;
- the research involves no more than low risk ([that is, where the risk, even if unlikely, is more serious than discomfort]);
- the research aims to benefit the category of children or young people to which this participant belongs; and
- either (i) the young person is estranged or separated from parents or guardian, … or (ii) it would be contrary to the best interests of the young person to seek consent from the parents, and provision is made to protect the young person’s safety, security and wellbeing in the conduct of the research.
4.2.10 ‘Standing parental consent’ enables parents to give standing consent (for example at the beginning of each school year) to their child’s involvement in certain types of research in the school setting during that year.
4.2.11 Schools may arrange for standing parental consent to be given for a child’s participation in research that: (a) is for the benefit of children; and (b) comprises no more than overt observation in school classrooms or anonymous or coded (potentially identifiable) questionnaires or surveys on subject matters not involving sensitive personal information or personal or family relationships.
4.2.12 For any other research, except under the conditions described in paragraphs 4.2.8 and 4.2.9, specific parental consent is needed for each project.
To respect autonomous agents is to acknowledge their right to hold views, to make choices, and to take actions based on their values and beliefs. Respect is shown through respectful action, not merely by a respectful attitude. The principle of respect for autonomy requires more than noninterference in others’ personal affairs. In some contexts it includes building up or maintaining others’ capacities for autonomous choice while helping to allay fears and other conditions that destroy or disrupt autonomous action. Respect involves acknowledging the value and decision-making rights of autonomous persons and enabling them to act autonomously, whereas disrespect for autonomy involves attitudes and actions that ignore, insult, demean, or are inattentive to others’ rights of autonomous action.
5.3. Conclusions on Ethical Guidelines and Need for Reform
6. Practical Implications
6.1. General Implications for Research Design with Adolescents
6.2. Co-Production and the Right to Participate
6.3. Trauma-Informed Research
- Legislation should be enacted to establish core principles for adolescent decision-making in research settings. In federated jurisdictions, this should be national legislation applying across all states, territories, or provinces.
- The legislation should establish a rebuttable presumption that adolescents aged 16 have the capacity to independently make decisions about whether to participate in research into social science, humanities and non-clinical medical research settings, and that where such an adolescent provides consent, it is legally effective.
- The legislation should state that where such an adolescent provides consent, parental consent is not required to legitimise the adolescent’s consent.
- The legislation should state that if the adolescent provides consent, the parent is not lawfully entitled to vitiate it.
- The presumption should be made rebuttable if the characteristics of the individual child mean they do not have cognitive capacity.
- The legislation should recognise that adolescents aged 14 or 15 also likely have the capacity to independently make decisions about whether to participate in research into social science, humanities and non-clinical medical research settings. The legislation should create a further rebuttable presumption that where such an adolescent provides consent, it is legally effective. This presumption could be made rebuttable by requiring the clear demonstration of significant risk related to the research, or other clear demonstration of vulnerability, to warrant additional parental consent.
- National research ethics guidelines should be amended to add clear principles recognising that an adolescent aged 16 has the capacity to independently make decisions about whether to participate in research, and that this applies at a minimum to research into social science, humanities and non-clinical medical research settings.
- These guidelines should clearly state that where such an adolescent provides consent, it is legally effective and does not require additional parental consent.
- Guidelines should further recognise that adolescents aged 14 or 15 also likely have the capacity to independently make decisions about whether to participate in research into social science, humanities and non-clinical medical research settings. The legislation should create a further rebuttable presumption that where such an adolescent provides consent, it is legally effective. This presumption could be made rebuttable by requiring the clear demonstration of significant risk related to the research, or other clear demonstration of vulnerability, to warrant additional parental consent.
- Guidelines should support the general principle of parental involvement in discussions with their children about research participation.
- Institutional review boards and human research ethics committees should comply with the substance of the recommendations made above.
- Key institutional actors in research processes involving adolescents, especially school authorities such as state education departments and non-state school authorities, should amend their policy approach to consent requirements in accordance with the substance of the recommendations made above.
- These key institutional actors should ensure their practical implementation of this revised approach is explained to relevant individuals and communities, including principals, teachers, parent committees or representative groups, and school students. To foster a community-wide understanding of and commitment to this approach, this explanation should be firmly based in the scientific evidence and normative principles observed in this analysis. These developments should be seen as positive advances for adolescent wellbeing, community participation, and societal advancement.
- These institutional actors, in explaining their approach, should therefore also explain that passive parental consent is the default model for research in these settings with adolescents of these ages. Parents should still be encouraged to discuss research participation with their children, and given the opportunity to do so. It should also be emphasised that in no instance can a child ever be coerced to participate.
- Institutional review boards, human research ethics committees, and researchers, should ensure any research involving adolescents that requires a trauma-informed approach rigorously complies with such principles.
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Active parental consent: parental consent is deemed required to enable the child/adolescent to participate and is only taken to have been provided if a parent expressly gives permission for their child to participate usually by signing a consent form.|
|Active–passive parental consent: a combination of active and passive consent models. For example, parents may be contacted once or twice seeking active consent with one to two further contacts seeking passive consent from non-respondents. Accordingly parents are first asked to provide active consent and if they do not respond they are informed that consent will be assumed unless they expressly indicate non-consent. An initial attempt to obtain active consent allows those parents who wish to do so to expressly indicate their consent. This may be recorded for future reference and application.|
|Passive parental consent: parents are informed that if they do not actively indicate their refusal to endorse participation their consent to the child’s participation will be assumed.|
|No parental involvement in consent: the child/adolescent is deemed solely responsible for their own decision and the parents are not directly involved in the consent process. The parents may still be notified about the presence and nature of the study and encouraged to speak with their child about it.|
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Mathews, B. Adolescent Capacity to Consent to Participate in Research: A Review and Analysis Informed by Law, Human Rights, Ethics, and Developmental Science. Laws 2023, 12, 2. https://doi.org/10.3390/laws12010002
Mathews B. Adolescent Capacity to Consent to Participate in Research: A Review and Analysis Informed by Law, Human Rights, Ethics, and Developmental Science. Laws. 2023; 12(1):2. https://doi.org/10.3390/laws12010002Chicago/Turabian Style
Mathews, Ben. 2023. "Adolescent Capacity to Consent to Participate in Research: A Review and Analysis Informed by Law, Human Rights, Ethics, and Developmental Science" Laws 12, no. 1: 2. https://doi.org/10.3390/laws12010002