Informed Consent

Elements expected for all roles

Examples of statements or behaviours which indicate the need for further development

• The importance of the autonomy and control of the survivor over the process and interaction

• The fundamental elements of informed consent: 1) informed: clear and understandable information sufficient to make an informed decision (ID, affiliation and purpose; methodology; options, rights, potential benefits and risks, including the confidentiality and deidentification; intended use, sharing or publication of the information) [MC 2.2], 2) voluntary: with capacity or supported capacity, no pressure, no inappropriate inducement, mitigating measures for imbalances of power and other dynamics which produce affirmation bias, [MC 2.6-2.7] 3) specific, 4) explicit, and 5) withdrawable

• That informed consent is needed at each step and for each different category or type of use

• Common power dynamics and differentials in action and how they can affect informed consent processes

• Basic signs that a person may have capacity issues

• Basic signs that a person may be under duress or pressure

• What the national laws are on mandatory reporting for all relevant contexts [MC 2.9]

• What the national laws and international standards are for informed consent and informed assent for persons under 18 years old in all relevant contexts [MC 2.5] (see also Understanding Gender, Diversity and Context)

• When ‘supported decision-making’ should be used [MC 2.4](see also Working with Persons of Diverse Gender, Age and Abilities)

• No knowledge or recognition of the impact of power differentials which can influence decision-making

• Considering informed consent as a blanket consent for all things that follow and all sharing, without needing specific consent

• Thinking or stating that consent can be implied

• Not knowing indicators affecting capacity

• Taking consent from a person under 18 years old, without knowledge of national law or checking understanding/developmental stage/choice of words or without sufficient expertise or experience

• Not knowing the difference between informed consent and informed assent in under 18 year olds

• Inability to answer survivor’s questions or discuss concerns about informed consent/work

Expected for all roles

Specific to programming (designing and delivering SCRSV programming)

Specific to survivor interaction roles (direct interaction with survivor to gather information)

Examples of behaviour which indicate a need for further development

• Respects an individual survivor’s choices, and uphold a survivor’s right to privacy, control and autonomy over their personal history, identity and image

• Take steps to reduce or mitigate the influence of power imbalances on survivor’s voluntary choices

• Creates a safe process to obtain informed consent (with all the necessary elements)

• Designs and manages implementation of programme with continuing survivor choice and informed consent as fundamental basis for survivor interaction and participation

• Designs and resources activities to ensure sufficient mitigating measures to maximise voluntariness, including time to consider

• Incorporates and resources universal design and reasonable measures to provide for recognition and adaptation for capacity issues such as informed assent and supported decision-making [MC 2.4]

• Designs and delivers flexible methodology to meet survivor choices and needs

• Designs and resources programming which can adapt to survivors saying no or later withdrawing consent, with a planned course of action and clarity on any limitations on withdrawal [MC 2.10]

• Empowers survivors through facilitating options and choices about if, when, where, how

• Facilitates and supports survivor decision-making processes, including for persons under 18 years old or persons with diverse cognitive abilities/cognitive challenges

• Explains survivors’ rights including their right not to answer questions and to end the interaction whenever they wish

• Recognises in practice indicators that capacity may be in question, including age, development, intellectual disabilities, communication challenges, literacy and education levels, which could impact how consent is obtained and recorded

• Recognises in practice indicators that someone may be under duress or pressure to agree

• Implements mitigation measures which reduce pressure on survivor, power differentials [MC 2.6]

• Creates a safe space in which survivors feel able to ask questions and make choices including saying no to some or all of the options

• Discusses risks, limitations and realistic expectations honestly with survivors as part of the informed consent process

• Delivers a safe fully informed consent process as an interactive two-way conversation which checks the survivor’s understanding throughout

• Placing own needs and objectives ahead of survivors’ wishes

• No informed consent process or plan designed or prepared for.

• Persuading, convincing or cajoling a survivor to share information.

• Incentivising or commercialising those around survivors or otherwise put pressure on survivors to share information (e.g. paying fixers or leaders to find survivors for you)

• Bartering food, money or basic needs in exchange for information

• Taking information and using it for a different purpose that agreed by the survivor. e.g. using photos/images of survivor or their home, or using their real name or location, without their express informed consent

• Understanding and delivering informed consent as a box ticking exercise, with one-sided provision of information, with closed questions seeking affirmation

• Rushing through the informed consent process

• Leaving a survivor confused or unsure who you are, what your objective is and what will happen to their information

• Making false or misleading statements to survivors and others, including providing unrealistic information about outcomes or benefits (e.g. it will prevent other crimes) [MC 2.7]

• Making promises that can’t be kept [MC 2.8, 3.6]

• Approaching survivors without warning/out of the blue/arriving at their doors asking for information [MC 2.1]

• Use of technical terms or jargon

• Providing insufficient or unclear information such that a survivor does not know who has their information and what it will be used for

• Not checking effective capacity or communication, e.g. using interpreters with only 60% common language/vocabulary, no consideration of the age of person or understanding of concepts

• Advising survivors what they should do or making decisions for them, rather than providing them with information to make own decision

• Not providing the survivor with follow-up or contact information in case they change their mind or wish to withdraw or modify consent [MC 5.9]

• Getting survivors to sign something they cannot or have not read

• Not asking a survivor for their consent because you believe it is implied by them talking to you or giving you information

• Subjecting a survivor to forensic examination without consent

• Reporting the survivor’s information without their consent (mandatory reporting)

Associated Values

Examples of attitudes or approaches which indicate need for further development

Core Values:Commitment and Responsibility; Humanity, Dignity and Empathy 

Other Values: Integrity, Honesty, Transparency

Approaches:

• Belief in the autonomy, agency, centrality and empowerment of SCRSV survivors

• Belief that the survivor is best placed to know what they need and want, and what their circumstances are

• Commitment to create environment in which survivors can say no [MC 2.2]

• Commitment to provide honest, realistic information [MC 2.8], including honesty and transparency about limitations [MC 2.9]

• Prioritising survivor wishes and needs, including acute medical and psychological support, ahead of own objectives [MC 1.4]

• Using powers, uniform or status to obtain survivor information without consent or exploiting the power imbalance, in order to obtain information [MC 2.6]

• Pressurising a survivor or emotionally manipulating them (telling them it is their patriotic duty, or that they owe it to other survivors or current victims)

• Putting pressure on someone to interview a survivor or on the survivor themselves when they are not ready

• Infantilising the survivor and believing they are incapable of making ‘good’ decisions and choices

• Not respecting withdrawal of consent [MC 2.10]