DeepSummary
In the early 1990s, members of the Havasupai tribe in Arizona agreed to provide blood samples to researchers at Arizona State University for a diabetes study. However, the researchers used the blood samples for other studies unrelated to diabetes and against the tribe's wishes, including examining their origins and relating them to other ethnic groups, which went against their creation beliefs. This betrayal of trust was uncovered years later, leading the Havasupai to file a lawsuit against ASU. After a lengthy legal battle, ASU returned some blood samples and paid a settlement, but the tribe's trust in researchers and institutions had been shattered.
The episode explores the deep cultural and spiritual harm caused by this breach of privacy and consent. It emphasizes the need for organizations to be responsible stewards of people's data, especially sensitive biological data from marginalized communities. Proper informed consent, transparency, and respect for stakeholders' values and beliefs are crucial to building trust and maintaining ethical data practices.
Linda Thielova, a privacy expert at OneTrust, provides insights into how companies can prioritize privacy and consent. She stresses the importance of customizing communication for different audiences, revisiting privacy assessments regularly, and involving stakeholder representatives throughout the process to avoid blind spots. By treating people's data with care and respecting their ownership over it, businesses can cultivate meaningful, trust-based relationships with their customers and stakeholders.
Key Episodes Takeaways
- Proper informed consent and respect for stakeholders' cultural beliefs and values are essential when collecting and using sensitive data, especially from marginalized communities.
- Violating privacy and misusing data can cause profound cultural and spiritual harm, as in the case of the Havasupai tribe's blood samples being used for unauthorized studies against their beliefs.
- Organizations are stewards, not owners, of people's data and have an ethical obligation to handle it responsibly and for the benefit of the data subjects.
- Prioritizing privacy and consent builds trust, fosters stronger relationships with customers and stakeholders, and enables businesses to gather better data.
- Customizing communication, conducting regular privacy impact assessments, and involving stakeholder representatives are crucial for identifying and mitigating privacy risks and blind spots.
- Relying solely on oral consent, especially for sensitive data, is problematic and can create legal and ethical issues for organizations.
- Anonymizing data may not be sufficient to protect privacy, especially for small or homogeneous groups, as group data can become personally identifiable.
- Biological data, such as blood samples, is among the most sensitive and private information, and its misuse can have severe consequences for individuals and communities.
Top Episodes Quotes
- “The more I found out, I felt like I was a specimen, and I still feel like I'm a specimen.“ by Carletta Tulousi
- “Businesses are basically stewards for the data. They have obligations that they need to comply with, and the people, as the owners, are the ones who should be reaping benefits from their data usage from them giving away the data, enabling the businesses to use it.“ by Linda Thielova
- “The fact that the ASU researchers used oral consent, that just gives me privacy compliance goosebumps because like the burden rests on you to prove that you have ticked all the boxes in informing the person, you are more likely than not processing the data lawfully. So that is very dangerous because suddenly you have this large poison data set that you might actually rely on.“ by Linda Thielova
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Episode Information
Trustonomy
OneTrust
11/9/23
In the early 1990s, Carletta Tilousi was one of hundreds of people from the Havasupai Nation who gave blood samples to Arizona State University researchers. They hoped to discover why type 2 diabetes was an epidemic in their remote community in the Grand Canyon. The Havasupai never did get any answers about diabetes, and for over a decade they had no idea their blood samples were being used by other researchers for projects that had nothing to do with diabetes.
Many companies collect personal data - names, birthdays, interests, payment information, and geolocation. But there’s no data more private and sensitive than biological data. So what happens when that information is used without consent?
Carletta recalls the day she found out the tribe’s samples were being used without consent, the anguish the research caused, and how the Havasupai fought to bring their blood back home.
Linda Thielova, OneTrust’s Global Data Protection Officer and Head of Privacy Centre of Excellence, explains why the Havasupai's story is no ordinary privacy violation, and how organizations can build trust-driven relationships around data.