A tool for considering ethics in Human Centred Design

I’ve spent the last three months working on an independent research project as the final part of an MA in Digital Experience Design with the lovely people at Common Good in Manchester, England.

My research has been primarily concerned with the ethical complexities which could arise when working with vulnerable people in the design process. One thing which I’ve come to realise is that there is no magic bullet when it comes to ethics in any field. Its also become a bit of an internal debate about what ‘vulnerability’ means in people and whether its even ethical to assume anyone should be treated any differently, but that’s for another article.

I believe treating people as people, not just participants (vulnerability or no) is a big part of uncovering the real value in any human centred design process.

I began my research with some early conversations with a range of amazing designers, in a myriad of companies, with first hand experience of working with vulnerable people. The ethical complexity across the range of challenges they were facing became clear. This insight led me to want to develop something that would provoke a conversation amongst teams when engaging with people while respecting their autonomy, expertise and judgement.

I started by mapping out the stages of the design process and the places where we might need to consider or have interactions with the people we are learning from.

Ethical Considerations

I started to notice patterns emerging in the stories and approaches, namely in how research participants are recruited, how consent is obtained, what information is disclosed and the incredible sensitivity and care in how relationships are developed.

Alongside the interviews, I also looked to other fields of research where ethics was a significant upfront consideration; including bio medical, legal and ethnographic as well as philosophical ethics.

Amongst this I found a paper written by Nathan Ford who supports operational research and medical advocacy at Medicens Sans Frontiers (MSF) and his team of global experts. Ford’s paper details an ethical framework for use by MSF when conducting essential healthcare research in conflict zones. The framework was created to recognise the need for a balance between the time intensive importance of traditional ethical approval for research, and against the urgency commanded by time critical situations; often highly volatile, in which circumstances can change dramatically from day to day.

I compared the considerations I found during my interviews and review of the current literature alongside Ford’s stated ethical benchmarks used by MSF and arrived at the following ethical considerations as a starting point:

A Framework for Ethical Consideration

1. Collaborative Partnerships

Actively seek out relevant national or international institutions, charities or NGOs who are working in the area you intending to work. Any research already undertaken saves unnecessary exposure for the people being researched and a duplication of effort on your part.

“You’re working within a triangulation of the person, their support network and yourself” — Alastair Sommerville

2. Community Engagement

How can you begin to understand and respect the values, culture, traditions, and social practices of the persons community? Involving the community or members of it (where appropriate) in the design and implementation of research will help you reveal and navigate any potential issues you might face while conducting it.

3. Social Value

Why you are doing the work, who directly benefits from it and what prospect of value might it provide to the people you want to learn from?

4. Scientific Validity

Ford defines this as ensuring that the design of the research is realistic given the social, political and cultural environment, alongside the results being of sufficient quality (sample sizes, etc).

Within the context of design research, it’s also important to consider the logistics of a project. Such as how will the data captured be stored, what measures will be taken to protect it (like not leaving an unlocked laptop with sensitive research data on public transport) and who will have access to it.

5. Fair Selection of Participants

The people you want to learn from should be selected in such a way as to ensure scientific validity of the research while minimising the risks. This means formulating clear inclusion and exclusion criteria and identifying and protecting vulnerable groups.

How might an imbalance in the representation of gender, ethnicity or sexuality affect your findings? In cases of vulnerable groups, does the potential benefit of their involvement outweigh any harm they may be subjected to?

6. Favourable Harm to Benefit Ratio

What potential harm could come of people involved in your research? This could be emotional, such as resurfacing traumatic memories or physical, such as a controlling and abusive partner finding out about their participation in a study on domestic violence.

Alternatively, what about the benefits? If the bad outweighs the good, then you should question the necessity of the research or if there’s a way to learn from people without putting them in harms way.

7. Informed Consent

This could be a whole article in itself! Where possible, the study community should be involved in establishing appropriate recruitment procedures and incentives. How you ask for consent should be acceptable and practical within the culture and linguistic abilities of the people you’re learning from.

I made a short journey map to detail these points and to demonstrate that thinking around informed consent needs to exist beyond the document or artefact used to capture it.

Icons from The Noun Project, right to left: Gregor Cresnar, Arthur Shlain and Delwar Hossain.

I’ve been building some software to help designers, researchers and their teams obtain and manage informed consent which supports this process and helps with the administration of doing the right thing. You can find out more about that over at our website: Consentkit.io.

One of the key factors when obtaining consent from vulnerable people is their decision making capacity, or DMC. The concept of DMC comes from the informed consent doctrine; a principle that is pervasive in modern medicine.

Informed consent requires three elements:

  • The adequate disclosure of information;
  • Voluntariness, such that the patient’s choice is made free of coercion or undue influence;
  • Competence, meaning that the patient has sufficient decision making capacity to use the information given to reach a decision.

Decision making capacity is a huge subject in itself. Without diving too deeply (for the sake of brevity) it may be divided into five sub-capacities:

  1. The individual must have an understanding of the facts involved in making that decision
  2. The individual must have an appreciation of the nature and importance of the decision to be made, including potential alternative choices
  3. The individual must be capable of reasoning, or understanding the benefits and risks of the medical plan of care
  4. The individual must be able to communicate his or her decision, and why that decision was made, and
  5. The individual should deliberate based on consistent personal values

The absence of any one of these sub-capacities would mean that ethically speaking, the person would have inadequate decision making capacity, and so be incapable of providing consent.

It’s a big deal in healthcare and generally when dealing with vulnerabilities— the NHS have some really great resources on it.

8. Respect for Recruited Participants & Study Communities

The confidentiality of people recruited and enrolled in the research should be protected. The most common way of doing this is to make names anonymous — although care should be taken to ensure that its not possible to figure out who the person is from other information in the study.

Care should also be taken to inform people who are actively involved in the research of any changes which may be relevant to them.

9. Independent Review

In Ford’s paper he states, “Public accountability of the research should be ensured through scientific and ethical review according to international standards. This may require the engagement of international as well as local ethics review boards.”

The problem I’ve encountered throughout my research is the duration of time needed to submit and review proposals by traditional committees is at loggerheads with the time poor backdrop of design sprints, agile processes and commercial pressures. I believe that independent ethical review is extremely important to considering ethics in the design process. Getting the two to co-exist where these time pressures are prevalent is going to be a challenge.

Applying these considerations in the design process

We started to apply these benchmarks in research planning workshops with the team here at Common Good. They were starting to feel a bit like a checklist (or more accurately, a number of checklists).

I came across Atul Gawande’s The Checklist Manifesto and was pretty amazed at the widespread application of them as a solution to address human inconsistencies in high pressure processes — everything from life saving surgical processes to safely landing a jumbo jet in an emergency.

The information coming out of the conversations and research was valuable and seemed like it fed into other resources we would typically create throughout the project, such as informed consent or personas for example.

Get out of the computer and up on the walls — an effective technique for shared understanding in design teams.

Common Good have a policy of “getting documents out of computers and up on the walls”. This serves a number of benefits: Everyone can see it, people can gather round it and share information and you can just see when new stuff is happening. So how might we get these ethical considerations up on the walls and visible, while respecting the teams autonomy, expertise and judgement?

This is my first prototype of the Ethical Research Canvas:

Ethical Research Planning Canvas v1

Having spent the last year using Alex Osterwalders Business Model Canvas pretty extensively, this visual model seemed to make a lot of sense to use. After some initial trials and feedback I made several changes to the language used to describe the benchmarks and some basic stuff like numbering to give people an idea of where to start. The challenge now seems to be in asking the right questions within the checklist for each benchmark.

It’s still a work in progress, but we’ve used it on a few projects here at Common Good now and some of my fellow students at Hyper Island have been trialling it for me for their research projects. The feedback has been generally positive and we’ve been able to iteratively improve the design of it with each round of testing. I’m sure we’ll continue to do so with future revisions.

Some initial feedback from testing

  • Having the considerations was particularly useful as they were unfamiliar with ethics and found the barrier to entry quite high
  • As a tool it was perceived as more accessible than the ethical review form provided by the university
  • The wording of some of the considerations was in parts really clear and in others really confusing — try to make the prompting questions simpler
  • The following fields were not understood: Favourable harm benefit ratio, Scientific validity and Community Engagement
  • Several considerations were considered to be ambiguous and needed further explanation
  • People quickly ran out of allocated room for each benchmark when applying post-it notes

If have any feedback on this, I’d love to hear from you. If you’re working on something and think this might be an interesting exercise to work through with your team — let me know and I’d be happy to email you a copy of the latest version.

Designing these interactions

The reason we need to think about how we design these interactions throughout the design process is to better uncover insights about the behaviours, actions and intentions of the people we are designing for. I wrote an article recently about how we can maximise the validity of these insights by considering and addressing the following three things when designing these interactions:

Looking at the benchmarks and questions within them whilst using the hierarchy as a lens, you see that a lot of the ethical considerations lead to a greater understanding of the person you’re learning from — contributing to the development of empathy.

I believe treating people as people, not just participants is a big part of uncovering the real value in any human centred design process.

I think its important to note that I don’t believe the benchmarks I’ve listed for consideration here are at all fully conclusive. Different audiences will have different considerations. For example, someone designing for dementia will have different considerations to those designing for incarcerated populations.

My intent is to use the canvas as a thinking tool to promote debate and thought amongst teams when planning research. I believe putting the responsibility onto teams and giving them the autonomy to decide how they conduct their research is central to ethics being more accessible in human centred design.

Now it’s your turn

What benchmarks would you include? Are they specific to your audience and their circumstances? How could this tool help you to achieve that?

Thanks for reading.