What if, in an interview with a local lifestyle magazine, a donor shared that they have a family history of bipolar disorder. Furthermore, they shared that they were formally diagnosed with bipolar disorder, they took medications to manage it, and did not exhibit any symptoms.

i. The information is publicly available,
ii. it’s primary source information (that is, it came directly from the individual), and
iii. the information provides insight into why this donor gives to your organization.

Is it ethical to add the data to your donor database?

Legally, it is medical information and thus subject to privacy laws. That would result in you not including the information. But it is publicly available, verified information, shared directly by the individual. Do the privacy laws related to medical information still apply in this situation?

This tidbit of intel provides insights to inform a cultivation and solicitation strategy, ensuring fundraisers are efficient and effective in their engagement efforts. Who wouldn’t want to leverage the data?

• How does your response change if the individual was a lapsed donor who hadn’t engaged for several years with your organization?
• What if, instead of bipolar disorder, the donor share they were an alcoholic? That they were diagnosed with early onset Alzheimer’s disease? That they experienced infertility or had a miscarriage? Do these different medical conditions affect your use of the information?
• What if the article was behind a paywall and access to the content came with agreeing to terms of service?

When it comes to ethical considerations related to donor data, there are no universal answers.

What is ethical in one situation may be unethical in another. And what is ethical today, may become illegal tomorrow. Context, legal considerations, organizational values and risk tolerance all influence these perceptions and decisions.

Donor data, in its various forms, is a critical resource for fundraising success. Ethical handling of this data involves safeguarding donor privacy, complying with applicable laws, and collecting and storing the appropriate information.

It's essential to strike a balance between effective data use and respecting donors' privacy. To accomplish this, consider consent, intention and collection strategy.

Ownership and consent

We all have ownership over our personal information. Which means, we decide if we will willingly share information publicly in order to access services, products, access or additional information.

In many situations it is illegal to collect someone’s personal data without their explicit consent.

Respecting the “right to be forgotten” is a fundamental aspect of consent. As much as it pains us to let a potential prospect or donor go, fundraising professionals must honour any withdrawal of consent to engage with the organization.

Transparency and intention

Donors have a right to know how you plan to collect, store, and use their data. Why are you collecting specific data points? Are the requested data points truly required?

Leveraging data is crucial to achieving fundraising goals. It must be done in a way that is transparent and intentional in order to foster trust.

Individuals tend to be more willing to share their personal information if they understand why, you are requesting it.

Only the essentials

Once upon a time, collecting and storing any and all donor data was considered best practice.

With the proliferation of data, collecting and maintaining accurate and relevant data is now more difficult. It can also be highly risky, especially if the source isn’t reliable and verifiable.

Do you truly need all the data points that you collect? Maybe not.

Final thoughts

Collecting and storing donor data is a delicate process that requires a respectful approach. When donors provide information, they trust the organization to use it appropriately.

Fundraising professionals should take proactive measures to ensure the ethical use of donor data. Because, what’s the worst that could happen?

Liz (she/her) is Chief Knowledge Connector at Liz Rejman + Co., a consultancy focused on the optimization of operations to increase productivity and performance for sustainability and scale. Her weekly newsletter #tinygains (www.lizrejman.co/newsletter) offers practical and actionable tips related to data management, ethics, prospect development, process, and productivity. Liz is the past President for the international prospect development association Apra and past member of the Board of Trustees for the Apra Foundation. She is currently the Secretary for the Interim Board of Directors for AFP-GTC. Liz is a contributor to "The Vigilant Fundraiser” and co-editor/author of "Prospect Research in Canada: An Essential Guide for Researchers and Fundraisers."