Consent is a Process, not (Just) a Form

When it comes to ethical storytelling for nonprofits, “consent” has become a buzzword. Nearly every article on the topic of ethical storytelling mentions the need for “informed consent,” yet few go to the trouble of defining what exactly that means, why we need it, or how it can get operationalized. In this article, I’m going to do that. But if you’re in a hurry, here is the main takeaway: 

Consent is not the form people sign so that you can use their picture or tell their story. Consent is an ongoing process that begins long before you hand out a form and continues long after it’s signed.

In this article, I’m going to be talking about that entire process and highlight the many aspects to consent.

The other day I was buying something online, and the website said that I would get 10% off if I gave them my phone number and opted in to text messages. So, I did. The next day I started to receive texts from this company almost every 10 minutes. I immediately opted out.

Giving me the chance to opt out is both required by law and part of how that company negotiates its relationship to its customers. I am in control at all times of the messaging I receive.

We give our donors that control, right? We ask them how they want to be engaged through email, text, phone, and mail.

But what about our clients?

Neary every week I come across media consent forms that say, “Your consent is irrevocable.”

What?! Why on earth is that the case?

Because we nonprofit staff are busy and don’t have time to take client photos off the website if they decide they don’t want them on there? It stands to reason that if we have the time to put a photo on our website, we have the time to take it down.

Now, we do have to be honest with clients that once something is printed and mailed, we can’t recall it and chase down every printed copy. Once something is on social media, we can delete the post but can’t control whether someone else screen grabbed it and reshared it.

But yes, we can take your image off our website.

Yes, we can stop using your story if you change your mind later on.

And here we have gotten to the very heart of what consent is all about – control. It’s giving people control over their own decisions in regard to their stories and images. It’s not about “empowering” people (who may already be very empowered), it’s not about avoiding a lawsuit (because in some places such laws are not enforced), and it’s not even about “doing the right thing” (whose definition of “right” are we talking about?). What consent is really all about is giving people the control they need in order to ensure their story is told in way they want it told – not the way we want our own stories told – (if you’re confused, see this article).

One form of exploitation I commonly point out is when nonprofits treat their donors better than their clients. Why would we allow our donors to change their minds about something, and not allow that of our clients? Why are we ok with taking detailed notes on a donor’s communication preferences and recording them in the database, yet when a client makes a special request about their story or image it’s just too burdensome for us to handle? We need to take a hard look at that double standard and examine where consent shows up (or doesn’t show up) in every part of our process.

“Consent” in essence means coming to a voluntary agreement, as opposed to “permission,” which implies that one party holds authority over the other (we get permission from our bosses, but get consent from our peers).

Gaining consent implies first that a person has the capacity to give it. I’m not talking about what is legal: every state and every country has different criteria for the age at which a person can provide consent, what kind of guardians can provide consent, and whether an institution can act as a guardian to provide consent on behalf of an individual. I’m assuming you know and follow the laws where you do your work. For the purpose of this article, I am referring to capacity to consent as the ability to:

  • 1) “understand relevant information;
  • 2) appreciate the consequences of the information for one’s own situation;
  • 3) reason about the available options; and
  • 4) communicate a choice.”

Source: Appelbaum PS. Assessment of patients’ competence to consent to treatment. The New England Journal of Medicine. 2007;357(18):1834–1840.

The “informed” part of “informed consent” can be harder to define. Referring back to Applebaum’s definition, I believe that action #4 – communicating a choice – is the sole responsibility of the client. The client must communicate a choice. However, actions #1, 2, and 3 – conveying relevant information, consequences, and available options – are the responsibility of the nonprofit. So, to me, “informed” means:

1. We tell the client how their story or image will be used.

I don’t mean we tell them about every single tweet. We can’t possibly know that detail at the time of the interview. But we can say, “This will be used in fundraising communications, and may appear on our website, social media accounts, and in digital and printed communications to our audiences.” If you can be more specific, then do so. 

2. We tell them what reasonable consequences to expect (and not expect)

This is where we mention that we can’t recall a mailed letter, and that once it’s on social media… it’s out there. If the client has concerns for privacy, this is where we talk about protecting their identity with pseudonyms, non-identifying photos, etc. You can create some boilerplate language for a form, but the consequences and concerns can be unique to the individual, so this is best done as a conversation.

We do also sometimes need to tell people that there are no additional resources or benefits offered for sharing their stories. We may pay a stipend to our story contributors, but they will not receive a percentage of funds raised or special program services. Most will know this, but sometimes it needs to be said.

3. We tell the client that they have options

Their options are:

  • They can decline to share their story. Assure them they will not lose access to the resources and benefits currently provided through your programs.
  • They can agree to share their story.
  • They can say no now, change their mind, and share their story later on.
  • They can say yes now, change their mind, and you’ll take down any content or pause production to the extent possible.

There you have it. Informed consent.

There are many ways nonprofits can operationalize informed consent. Not all of these ideas will be feasible at your organization, so incorporate what you can when you can.

Before the interview:

  • Allow contributors to opt in to sharing their stories, rather than be selected. Is there a sign-up sheet, or another way they can “raise their hand” for the experience, as opposed to being invited (which may feel like being pressured)?
  • If you are going to invite people to share their stories, think carefully about who is doing the inviting. Is it better coming from someone they already know and trust, or someone they do not know?
  • Provide relevant information, consequences, and available options when someone is being invited (or opting in) to sharing their story.
  • Share sample questions and ask if there are any topics that are off limits so that you can avoid insensitive and triggering questions at an interview.
  • Ask them what they need to participate in the interview. That might be transportation to your site, or you coming to their residence, or having family or loved ones present, etc.
  • You can choose to discuss any stipends or honorariums upfront, after they confirm the interview, or even after the interview. Every organization does it different depending on the structure and clients they work with.

During the Interview:

  • Explain who you are and what you are hoping to achieve, if you haven’t done so already.
  • Provide, once again, relevant information, consequences, and available options when someone is being invited (or opting in) to sharing their story.
  • If needed, make sure someone from your organization is present whom they already know and trust.
  • Allow them to either sign the form, or give verbal consent. The verbal option is important if you are working across language difference, with clients who are not able to read, and in cultures where the written word is not trusted. Verbal consent can be recorded on audio, on camera, or in the presence of a witness (usually the interpreter) who can sign that it was received.
  • Allow time for them to ask any questions about the form or process.
  • Get consent throughout the interview by opening question with, “Is it ok if we discuss….?“ “I’d like to learn more about…. are you open to sharing?” “You mentioned…. Can I ask a follow up question to that?”
  • If taking pictures on a digital camera, show them to the client at that time for approval. They may have consented to be photographed, but let’s make sure they do not find their photos unflattering.
  • Use the names, words, pronouns, and terminology the client has provided you.
  • Stick to the boundaries you set: If you told them the interview would last until 2:00pm, then end on time.
  • At the end of the interview, inform the client of the next steps in the process, set accurate expectations of follow up, and make sure they know how to contact you if they wish to provide more information, or if they change their mind.
  • Check out my article on Equity in Interviewing for more tips.

After the Interview:

  • Check in with the client 1-5 days after the interview. See how they are feeling about the interview. This may have to be done through an intermediary, like a program staff member.
  • Send a thank you card, thank you email, or thank you phone call to the client. This is good donor stewardship and we need to treat our clients like donors. If the client cannot be reached by phone, mail, or email, have the program staff relay a separate message of thanks within a day or two after the interview.
  • Practice editing with equity in mind and check out my article here.
  • Be personally available to be contacted in case the client has questions or changes their mind. You cannot ask for the gift of someone’s time and then disappear behind a curtain after they give it to you.
  • Allow the client to view and approve any photographs (if they didn’t get to during the interview).
  • Allow the client to read and edit the story brief. Since you may be sharing the story for years, and they cannot possibly approve every tweet, type a comprehensive story brief that they can review and edit. All future campaigns and posts will draw from this brief in due time.
  • If possible, follow up with the client after the story has gone live or the campaign has concluded, and share the results. (“We got X number of new followers,” “Your story was a favorite among donors,” “We raised enough money to build a new classroom…”)
  • Consider sunsetting photos and stories after a period of time (such as 3 or 5 years).
  • Make sure that program officers always know who to contact if a former client wants to update their story or have it removed. You may not be at the organization forever, so whose role will it be to receive such requests and inquiries? Give that information to your program staff.

I hope you enjoyed taking a deep dive into the topic of consent and found new tangible ways to apply this at your organization. For more like this, please subscribe to my bi-monthly (that’s once every two months) newsletter.