Safeguarding: How to protect vulnerable research participants

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The MRS Codeline advisory service, which advises members on all aspects of the code and guidelines, has noticed a growing number of enquiries seeking assistance on vulnerable participants. Perhaps unsurprisingly, this trend began during the pandemic lockdowns, and now continues with participants referencing financial hardship, such as the current cost-of-living crisis, as adversely affecting their mental health.

Participant vulnerability is a complex, dynamic state that can affect anyone at any time for many different reasons. All participants are different, with a wide range of needs, abilities and personal circumstances. These differences can place some in a position of vulnerability or greater risk of harm.

Some people’s ability to participate effectively in the research may be affected by certain individual characteristics. These can be short- or long-term, might fluctuate over time, and may not be obvious. Participants may be vulnerable because their competence to give informed consent is uncertain, because socially they are in a position where it is difficult for them to give informed consent, or their circumstances may affect their decision to consent. Additionally, being involved in the research project can increase participants’ potential vulnerability.

It is also important to recognise that not all the risk factors will be relevant all of the time, and the important point is to manage the relevant risks rather than seek to avoid risks involved in researching individuals or populations in vulnerable positions.

Permanent vulnerabilities

Permanent or long-term characteristics could include, for example: people who have learning disabilities or other permanent or long-term disabilities; those on a low income; people with low literacy levels; or communities that have cultural barriers to participation. These characteristics can affect large numbers of people.

Fluctuating vulnerabilities

People can be made vulnerable by transitory situations that are not necessarily obvious at first glance. Fluctuating characteristics might include: mental health issues; where English is not a first language; health problems; location; or lack of internet access.
Short-term vulnerabilities

Short-term characteristics causing vulnerability could be things related to sudden changes in circumstances, such as loss of employment or income, bereavement, relationship breakdown, or caring responsibilities.

MRS guidance

The MRS best practice guide and checklist on research participant vulnerability aims to help practitioners identify, understand and respond to research participant vulnerabilities effectively and consistently.

Best ethical practice is reinforced by code rules covering vulnerable people, underlining the importance of our members’ professional activities being widely accessible:

Rule 23: Members must take reasonable steps to assess, identify and consider the particular needs of vulnerable people involved in their professional activities.

Rule 24: When working with vulnerable people, members must ensure that such individuals are capable of making informed decisions and are not unfairly pressured to cooperate with a request to participate, and that they are given an opportunity to decline to take part.

As the code is due to be revised, the comment at Rule 2, regarding marketing activities, has been expanded, to wit:
Rule 2: Members must ensure that when undertaking direct marketing activities they adhere to all relevant specific legal and ethical requirements that apply to direct marketing practice.

The following practices fall within the scope of direct marketing:

• Offering client goods or services, or vouchers to purchase client goods or services, as an incentive, reward or expression of thanks
• Use of promotional language in describing clients in invitations or introductions to projects
• Offering materials to participants that promote clients or their products and services. This includes referring participants to a client website at the conclusion of a project.

Members may provide information about a client’s products or services where it is necessary to avoid adversely affecting a participant; for example, where a sensitive subject has been discussed, members may provide information on relevant help lines operated by a client. This could include wellbeing information and advice to assist with financial difficulties.

These rules require members to make every reasonable effort to ensure their professional activities do not cause harm to those who have directly participated or, more broadly, to anyone affected by it. This includes members taking reasonable action to ensure that others do not breach, or cause a breach of, the code.

Methodological considerations

The impact of vulnerability on the data-collection exercise will also vary according to the type of methodology used in the project – for example:

Telephone
Some participants find it difficult to differentiate between genuine research calls and selling under the guise of research (sugging), fundraising under the guise of research (frugging), or personal protection insurance (PPI). Members must realise that calling a telephone number after a firm refusal has been given is in breach of the MRS Code, as it is likely to cause harm, adverse effects, and damage the reputation of the sector. This is the reason why MRS requires its members to maintain ‘do not call’ lists to avoid harassment of individuals.

One-to-one interviews
Many participants, particularly the elderly or less mobile, are understandably wary about inviting interviewers into their home. This also applies to the safety of interviewers and researchers when this methodology is used, and, as such, practitioners must be trained on how to alleviate a threatening situation.

Group interviews
Care must be taken that all participants are able to contribute to group discussions and are not bullied, intimidated or belittled. Participants must be told what will be expected of them when they agree to participate. This includes any physical exercise or anything unusual that may be required.

Recognising vulnerability

To recognise a vulnerable person and their needs, practitioners developing proposals and conducting data-collection exercises should consider if members of the research team know how to recognise vulnerability and deal with vulnerable participants. This includes how to react if any abuse or serious crime is revealed during the data-collection process.

The research team should receive specific training ahead of the project and be periodically assessed on their understanding of any guidance.

If the topic of the data collection is sensitive – and it is known, or likely, that some or all of the participants are potentially vulnerable – ensure that support materials and helpline numbers are available to be provided to participants. It may be helpful to contact a relevant support group or charity for their advice on specific areas before commencing the project, to help identify any potential issues.

Anyone who has a question regarding research participant vulnerability, or any other data-collection activity, is encouraged to contact codeline@mrs.org.uk

This article was first published in the October 2022 issue of Impact.