The privacy breakdown that betrayed a nation | Trustonomy podcast: Episode 4

Summary

1989年、アリゾナ州立大学の研究者が、ハバスパイ族の血液サンプルを収集した際、糖尿病研究以外の目的で族の同意なく使用していたことが発覚しました。この問題は、先住民コミュニティとの信頼関係を裏切る重大な行為でした。企業や団体は、データの収集とプライバシーの保護において十分な透明性と同意を確保する必要があります。利害関係者との対話を通じて潜在的なリスクを特定し、データの取り扱いにおいて高い倫理基準を持つことが、信頼を築く上で非常に重要です。

Takeaways

• 😲 ハバスパイ族の血液サンプルは、糖尿病の研究以外にも無断で使用された。これは族の伝統的信念に反しており、大きな裏切りとなった。
• 🔐 研究機関は適切な同意を得ずに個人データを使用し、プライバシーを侵害した。これは信頼関係を損なう重大な過失である。
• 👩‍⚖️ ハバスパイ族はアリゾナ州立大学を提訴し、2010年に70万ドルの賠償金と血液サンプルの返還を勝ち取った。
• 👥 小規模な集団のデータは、個人情報として扱われる必要がある。anonymity集団全体を特定できてしまうためだ。
• 🤝 適切な同意を得るには、対象者が完全に理解できるよう透明性を持たせ、文化的背景にも配慮する必要がある。
• ✅ プライバシーインパクトアセスメント(PIA)を実施し、データ収集の目的と方法、リスクを事前に検討することが重要である。
• 💻 企業はデータの受託者にすぎず、データの所有者である個人のプライバシーを尊重する義務がある。
• 📜 同意書の内容が広範囲すぎると、プライバシー侵害のリスクが高まる。目的を明確に特定する必要がある。
• 🌐 プライバシーと同意の確保は、法令遵守以上に、企業が顧客との信頼関係を築く上で不可欠である。
• 💔 ハバスパイ族の事例は、データの不適切な取り扱いがいかに深刻な文化的・精神的傷を与えるかを物語っている。

Q & A

ハバスパイ族の人々は、どのような健康問題に直面していましたか?

ハバスパイ族の人々は、1980年代後半には成人の50%以上が2型糖尿病に苦しんでいました。これはアメリカ国内平均の5%と比較しても極端に高い数値でした。糖尿病は同族にとって深刻な問題となっていました。

アリゾナ州立大学の研究者たちは、なぜハバスパイ族の血液サンプルを収集しようとしたのですか?

ジョン・マーティン博士は、ハバスパイ族の糖尿病が食事と遺伝の組み合わせによるものだと考え、遺伝学者のテレーズ・マーコウ博士と共に研究を始めました。最初のステップは血液サンプルを収集することでした。

研究者たちは、ハバスパイ族の同意なしにどのような研究を行いましたか?

ハバスパイ族の血液サンプルは、糖尿病研究以外に24の別の研究プロジェクトで使用されていました。これには統合失調症や近親婚の研究なども含まれ、同族の願いや信念に反するものでした。さらに、同族の起源に関する研究も行われ、彼らの祖先がアジアからベーリング海峡を渡って移住したと主張されました。

ハバスパイ族はこの研究に対してどのような反応を示しましたか?

ハバスパイ族は大きな裏切り感を抱きました。彼らの血液が同意なく使用されたこと、起源に関する研究が彼らの創造神話に反していたことなどから、トライバル・リーダーや長老たちが涙を流すほどでした。カーレッタは標本扱いされたような気持ちになったと述べています。

ハバスパイ族は研究機関に対してどのような法的措置を講じましたか?

ハバスパイ族は、アリゾナ州立大学が適切な同意を得ずにプライバシーを侵害したとして訴訟を起こしました。主な目的は血液サンプルを取り戻すことでした。2010年、大学側は41名の族員に70万ドルを支払い、151件の血液サンプルを返却しました。

リンダ・ティエロヴァはこの事件からどのような教訓を得ましたか?

ティエロヴァは、研究者たちがプライバシーとデータの適切な取り扱いを軽視していたと指摘しています。同意の重要性、影響評価の実施、ステークホルダーとの協議など、データ管理における適切なプロセスの必要性を強調しています。プライバシーを守ることで、企業は人々の信頼を得られると述べています。

この事件は、企業がデータ収集においてどのような配慮をすべきだと示唆していますか?

透明性の確保、十分な情報に基づく同意の取得、対象者のニーズへの配慮(言語や文化的背景など)、プライバシー影響評価の実施、ステークホルダーとの継続的な対話が重要であることを示唆しています。個人やグループのプライバシーを尊重し、信頼関係を構築することが肝心です。

この事件が教えてくれるプライバシー保護の重要性とはどのようなものでしょうか?

この事件は、適切な同意とプライバシー保護の重要性を物語っています。企業は単にデータを「所有」するのではなく、「管理」する立場にあります。プライバシー保護を怠ると、個人やグループの信頼を失い、企業側にも大きな損害がもたらされます。従って、データの収集と利用においてプライバシーを最優先することが求められます。

カーレッタとハバスパイ族は、この出来事からどのような教訓を得ましたか?

カーレッタは、ハバスパイ族の伝統的な信念やプライバシーが軽視されたことで、大きな精神的な苦しみを経験しました。しかし同時に、この出来事は族を団結させ、一つの声を持つ強さをもたらしました。彼女は他の先住民族に同じ過ちを繰り返してほしくないと願っています。

Outlines

00:00

👩‍🦱 ハバスパイ族のダイアビーティス危機と血液サンプル収集の提案

19歳のカーレッタ・ティロージは1989年にハイキング中、アリゾナ州立大学のジョン・マーティン博士からダイアビーティスの将来的なリスクを知りたいかと尋ねられた。ハバスパイ族はダイアビーティスの脅威にさらされていたため、カーレッタは血液サンプルを提供した。650人の部族員全員にこの申し出がなされた。しかし、この血液がダイアビーティス研究以外に使用されることは知らされなかった。

05:02

🧪 血液サンプルの不適切な使用と訴訟

実際には、ハバスパイ族の血液サンプルは24件の研究プロジェクトに使用され、統合失調症や近親婚など部族の信念に反するものも含まれていた。最も深刻なのは、部族の起源に関する研究で、彼らの祖先がベーリング海峡を渡ってきたと主張するものであった。2003年、カーレッタはこの問題を発見し、部族は大学側に訴訟を起こした。7年後の2010年、大学は41人の部族員に70万ドルを支払い、151本の血液サンプルを返還した。しかし、記録の欠如で一部のサンプルは返還されなかった。

10:03

🕊️ 信頼の裏切りと文化的損害

ハバスパイ族にとって、肉体的一部が墓に埋められないと魂は安らげないという信念があった。返還されたサンプルは神聖な山に埋葬されたが、カーレッタのサンプルは記録がなく空の箱を埋めた。この出来事は、部族に対する植民地時代からの搾取と裏切りの歴史の中で、新たな深刻な裏切りとなった。研究者たちは科学的探究に没頭し、実際の影響を考慮しなかった。生物学的データは最も私的なものであり、特に文化的信念が異なる脆弱な集団に対しては、適切な同意と個人情報保護が重要である。

15:05

🛡️ 適切な同意とプライバシー保護の重要性

企業がデータを収集する際、適切な同意を得ることが不可欠である。同意は透明性が高く、具体的でなければならない。ハバスパイ族のように英語が第二言語の場合は、さらに理解を深める努力が必要だ。個人データか否かの判断も重要で、少数民族など小さなグループのデータは個人情報とみなされる可能性がある。プライバシー影響評価などのツールを活用し、利害関係者の意見を取り入れることで、同意とプライバシーをより適切に設計できる。これにより企業は信頼を構築し、より良いデータを収集できる。

20:08

✅ 同意とプライバシーの継続的なケアとデータの管理

企業はデータの受託者にすぎず、データ提供者に対して義務を負う。適切な同意を得るためには、一度きりのコミュニケーションでは不十分で、継続的なチェックが必要だ。同意書のテンプレート使用は避け、対象者に合わせてカスタマイズすべきである。プライバシー影響評価を定期的に見直し、計画どおりにデータが使用されているかを確認する。これにより、データ提供者に不快な驚きを与えることがなくなる。企業は同意とプライバシーに真剣に取り組むことで、信頼関係を築き、長期的な価値を生み出せる。

25:12

🕊️ 信頼の構築と修復の重要性

ハバスパイ族は、訴訟の和解後にDNAの誤用に対する初の個人補償を受けた。個人データの価値が高まる中で、企業はデータの信頼できる管理者でなければならない。カーレッタと部族は、適切な同意とプライバシーを求める権利を示した。この経験は、部族を団結させ、一つの声を持つようになった。明示的な同意を得て、利害関係者と協議し、個人データの扱いに細心の注意を払うことで、企業は信頼を構築し、守ることができる。

Keywords

💡遺伝子データ

遺伝子データとは、個人の遺伝的な情報を含むDNA分子の配列データのことです。この映画では、ハバスパイ族の血液サンプルから抽出された遺伝子データが、当初の糖尿病研究とは関係のない多くの研究で使用されたことが問題視されています。遺伝子データは非常に個人的で機密性の高い情報であり、特にマイノリティ集団の文化的信念を踏まえた上で、適切な同意と個人情報保護が重要とされています。

💡同意

同意とは、データ収集や使用目的について、対象者が十分な情報を得た上で合意することを指します。この映画では、ハバスパイ族員に対して、彼らの血液サンプルの使用方法が適切に説明されず、広範囲な同意書に署名させられたことが問題視されています。適切な同意を得るためには、対象者の言語や文化的背景を考慮し、透明性を持って情報を伝える必要があります。

💡個人情報保護

個人情報保護とは、個人を特定できる情報が不適切に利用、開示されないよう保護することです。この映画では、ハバスパイ族の小さな集団の血液サンプルから得られたデータが、個人を特定しなくとも当該集団全体の情報となり得ることが示されています。個人情報保護を適切に行うには、集団データが個人情報になり得ることを認識し、細心の注意を払う必要があります。

💡信頼関係

信頼関係とは、両当事者間で互いを信頼し合える関係のことです。この映画では、アリゾナ州立大学がハバスパイ族の同意なく血液サンプルを別の研究に使用したことで、両者の間に築かれていた信頼関係が裏切られました。企業や団体が個人データを扱う際、適切な同意と個人情報保護を行うことで信頼関係を構築し、維持することが重要とされています。

💡文化的信念

文化的信念とは、ある集団が長年にわたって培ってきた価値観や規範のことです。この映画では、死者の体の一部でも残されていると魂が完全に旅立てないというハバスパイ族の文化的信念が取り上げられています。個人データを扱う際、当該集団の文化的信念を理解し尊重することが、適切な同意と個人情報保護につながります。

💡プライバシー影響評価

プライバシー影響評価(PIA)とは、個人データの収集や利用が個人のプライバシーにどのような影響を与えるかを事前に評価するプロセスのことです。この映画では、PIAを適切に実施することで、データ収集の目的や方法、リスクを事前に把握し、同意と個人情報保護を適切に行えることが示唆されています。PIAには利害関係者の意見を反映させ、定期的に見直すことが重要です。

💡透明性

透明性とは、データの収集や利用方法について、対象者に対して明確でわかりやすい説明をすることです。この映画では、ハバスパイ族への説明が不十分で、彼らが自分たちの血液サンプルがどのように使われるのか理解できなかったことが問題視されています。企業や団体は個人データを扱う際、透明性を持って同意を得ることが、信頼関係の構築につながります。

💡マイノリティ集団

マイノリティ集団とは、人種、民族、文化的背景において社会の主流から異なる少数派の集団のことです。この映画が取り上げたハバスパイ族は、先住民族という立場のマイノリティ集団にあたります。マイノリティ集団のデータを扱う場合、彼らの文化的信念や言語を十分に理解し配慮する必要があり、適切な同意と個人情報保護が一層重要となります。

💡データ管理

データ管理とは、個人データの収集、利用、保管、廃棄に至るまでのライフサイクル全体を適切に管理することです。この映画では、ハバスパイ族の血液サンプルの取り扱いが不適切であったことが示されています。適切なデータ管理を行うためには、同意取得、個人情報保護、透明性の確保が不可欠であり、これらを怠ると信頼関係が損なわれる恐れがあります。

💡生物学的データ

生物学的データとは、個人の生物学的な特徴を示すデータのことで、血液サンプルや遺伝子データなどが含まれます。この映画では、ハバスパイ族の血液サンプルが重要な生物学的データであり、その取り扱いには特に注意が必要であることが示されています。生物学的データは個人を同定する上で非常に重要な情報源であり、その収集と利用には慎重さが求められます。

Highlights

The Havasupai tribe's blood samples were used for research purposes beyond what they had consented to, including studies on schizophrenia, inbreeding, and their ancestral origins, which went against their cultural beliefs.

The researchers failed to obtain proper informed consent from the Havasupai tribe, relying on broad and vague consent forms or even oral consent, which is inadequate for sensitive data like biological samples.

The Havasupai tribe filed a lawsuit against Arizona State University for violating their privacy and failing to obtain proper consent, and eventually received a settlement and the return of some blood samples.

Protecting privacy and obtaining informed consent is especially crucial when dealing with marginalized groups with different cultural beliefs, as there can be significant emotional and spiritual harm caused by misuse of their data.

Getting privacy compliance right is not just about following laws, but also about building trust and meaningful relationships with the people whose data you have, which can lead to business value.

Businesses should customize their consent communication and processes for different groups they interact with, considering factors like language barriers and cultural differences.

Privacy impact assessments (PIAs) are recommended as a proactive way to define data collection, usage, and potential risks, and should involve input from stakeholders to identify blind spots.

Businesses are stewards, not owners, of the data they collect, and should prioritize the rights and benefits of the individuals whose data they have.

Laws are starting to reflect the value of personal data, making it increasingly important for businesses to be trustworthy stewards of that data and prioritize consent and privacy.

The Havasupai case was reportedly the first time individuals were paid for the misuse of their DNA, highlighting the growing importance of protecting personal data.

The Havasupai tribe's experience united them and made them stronger in demanding proper treatment of their data and respect for their cultural beliefs.

Explicit statements about data collection, usage, and confirmation of understanding from all involved parties are essential for informed consent.

Prioritizing consent and privacy builds trust with stakeholders, leads to better data collection, safeguards companies, and protects those who provided their data.

The Havasupai tribe's diabetes epidemic, caused by changes in lifestyle and diet after being forcibly relocated, made their blood samples valuable for research on the disease.

Researchers at Arizona State University used the Havasupai blood samples for studies unrelated to diabetes, such as comparing their DNA to primates and investigating their ancestral origins.

Transcripts

I was 19 years old and I was approached on the trail

and Dr. John Martin said, “Do you want to know

if you're going to have diabetes in the future?”

It was 1989, and for Carletta Tilousi and the indigenous people

of the Havasupai tribe, diabetes was becoming a serious threat.

I automatically said, “Yes.”

Roll up your sleeve, please.

This won’t hurt.

And I went in, got my blood taken,

and after they take that blood, they flew it out in the helicopter

and brought it four and a half hours down to Arizona State University.

It was an offer proposed to all 650 members of the Havasupai tribe.

What they couldn't have known was their blood was going to be used

for much more than diabetes research.

In fact, researchers used it however they liked, including

in ways that went against the tribe's wishes and beliefs.

And to this day, I don't know whether or not I'm prone to diabetes.

I'm Shalene Gupta, and

this is Trustonomy, an original podcast from OneTrust.

In each episode, we examine stories from the past moments

when companies and organizations broke that crucial element: trust.

These are fascinating and sometimes tragic stories,

but they also show us how businesses and organizations can do better today.

We're learning how to build and repair the superpower of trust.

This time we're examining how a study at Arizona State University

broke an already fragile trust with the Havasupai tribe.

Biological data is the most private and personal information you can collect,

and getting proper consent and protecting privacy is especially important.

When we are talking about

marginalized groups with cultural beliefs different than your own.

I think cultural beliefs are actually super important foundation

for how you build your privacy program and how you build consent.

That is Linda Thielova.

We'll hear more from her later, but first, who are the Havasupai?

The rocks surround by village, they are over a thousand feet

and the upper layer is white mesa,

so when the sun comes up, it hits the mesa

and it comes down slowly and lights up the village.

Carletta Tilousi is a member of the Havasupai tribe.

[Carletta speaking in her native language]

She said...

My name is Carletta Tilousi.

I'm from Havasu Canyon, and the story I share with you today

hopefully makes an imprint on your memory.

Carletta’s village is located on the west side of the Grand Canyon.

It is incredibly remote.

People can only arrive by helicopter, horseback

or a long hike in, but it's worth the track.

In fact, her land is famous for its incredible turquoise waterfalls.

We are known for our beautiful waterfalls that runs through our canyon.

Our water eventually turns

into the color blue-green, and that is what we are

named after Havasu Baaja means people of the blue-green water.

More than 300 tribal members

still live on the reserve in the canyon today.

In pre-colonial times,

the tribe roamed a vast area of 1.6 million acres about the size of Delaware.

They hunted game and thrived by growing corn, melon, squash and beans,

but that prosperity came to a halt when pioneers discovered silver on their land.

In the late 19th century, president Chester Arthur claimed the vast

majority of the Havasupai’s land for the American public.

Settlers arrived, game was depleted,

and smallpox and measles ravaged the Havasupai.

Then in 1903...

Theodore Roosevelt saw the Grand Canyon for the first time

and felt that it was important to preserve this area

and made a government action

to make it a Grand Canyon National Park, which caused the livelihood

and the cycle of my people to change drastically.

Within a few years, the tribe was forced off of their land and moved to an area

in the canyon much smaller than their original territory.

And the lack of agricultural and hunting land had a very concrete impact

on their health.

People's lifestyle and diet changed drastically,

and that's how we became prevalent

to diabetes.

By the late 1980s,

more than 50% of Havasupai adults were suffering from type two diabetes.

To put that in perspective, the US national average at that time was only 5%.

Diabetes was now an epidemic for the Havasupai

and its impact on the community was serious.

Kidney failure is a common outcome of diabetes.

If that happens, a patient requires dialysis

several times a week to remove fluid and waste from their blood.

Carletta’s village doesn't have the capacity to run a dialysis clinic,

so when people develop diabetes, they're often forced to leave the reserve.

When Carletta’s stepmom was diagnosed with diabetes, she was forced to leave too.

Leaving her home, leaving her gardens,

leaving all her friends and moving into another community,

I believe was the hardest for her, and she passed away in 2001.

Diabetes has increased over the years.

I think 2023, there's a lot of us

that are battling with it right now.

Diabetes was already

an issue among the Havasupai in the 1960s when Dr. John Martin,

a professor at Arizona State University, developed a good relationship

with the tribe.

But it wasn't until 1989 that tribal leaders asked him

what could be done about the health crisis.

Martin suspected their diabetes was caused by a combination of diet and genetics,

so he asked genetics professor Therese Markow

to work with him on the study.

The first step was to collect blood samples, but Dr. Markow

wanted to use the Havasupai blood samples to conduct other research as well.

So she applied for funding.

Markow decided to write her own grants without the knowledge of Dr. John Martin,

and that's where the whole process crumbled beneath them.

From 1990 to 1992, hundreds of Havasupai

people gave their blood to researchers at Arizona State University.

Soon after it became clear to Dr. Martin

that diabetes was spreading too quickly

in the Havasupai population to be caused by genetics.

The rationale for all those blood samples was gone.

That might have been the end of the story,

but then in 2003, during Carletta's

last semester of college at Northern Arizona University...

I saw Dr. John Martin walking on campus and he goes, “Oh, by the way,

there's a dissertation that you might be interested in listening

to, and it's about Havasupai

blood samples being utilized for a study.”

And I said, “Okay, well, I'll be there.” When Carletta arrived,

When Carletta arrived,

the lecture hall was packed and a PhD student was already speaking.

The student was studying the DNA structure

of an African community

and compared it with the Havasupai DNA structure

and then also compared it with a primate.

Carletta didn't understand the technical aspects of the study,

but she quickly figured out that it had nothing to do with diabetes.

When the student finished his presentation and there was a question period.

And I asked

if he had received permission from the tribe

and also permission from the individuals to do this study.

And he said, “No.” And they ended the dissertation

and asked me to go with them into a separate room.

And that's when Carletta met Dr. Markow for the first time.

There was a lot of tension in the air.

There was a lot of back and forth about consent forms,

and Markow and Martin were yelling at each other at some point,

and I called the leader of my tribe and I said,

“I think there's an issue here that you really need to know.”

A subsequent investigation determined that the Havasupai blood samples

had in fact been used by Arizona State University

and other institutions for two dozen research projects,

none of which had anything to do with diabetes.

These included studies on schizophrenia and inbreeding, very taboo subjects

for the Havasupai.

But perhaps the greatest betrayal here

was that research had been conducted into the tribe's origins.

Their blood samples were used to argue that their ancestors

had migrated from Asia by walking across the Bering Sea land bridge.

We were taught

that we were created in northern Arizona on the rims of the Grand Canyon,

and so that study in particular affected our minds, really.

Our main existence of who we are,

and that goes against our own creation stories.

And as the report was being read,

you can hear weeping in the room, weeping

from our tribal leaders, weeping from our elders.

They felt so violated.

What had begun is an earnest

examination of the Havasupai diabetes, which was itself the result of colonial

theft and betrayal had led to yet another betrayal.

The more I found out, I felt like I was a specimen

and I still feel like I'm a specimen.

Carletta had given her own blood to the researchers

and agreed to participate

in the diabetes study, but she never signed a consent form.

Some members of the tribe did sign a consent form, but it was incredibly broad.

It claimed the blood could be used to “study the causes

of behavioral/medical disorders.” This language was vague,

a problem that was further compounded because English is a second language

for most tribal members, few of whom graduated from high school.

So how do you interpret

behavioral disorders?

How do we interpret that?

The only thing that was approved by the tribe was to study diabetes.

When the blood samples were obtained, we weren't explained properly

what our blood samples were going to be used for.

It was obvious to Carletta that her people's rights had been ignored.

After speaking with Havasupai tribal leaders, they decided to file a lawsuit.

It argued that Arizona State University did not receive

proper consent from the Havasupai and violated their privacy.

The scope of the wrongdoing

was broad and included issues that researchers likely never considered.

For Carletta and her tribe,

the primary goal of the lawsuit was to get their blood samples back.

In the Havasupai religion, when a person dies...

Every part of their body will be buried with them

so that their spirit can transition

into the spirit world.

If part of their body is here

in this world, in a lab,

our belief says that their soul will never rest.

So our lawsuit was not revolve around money.

The people that had gave blood who had deceased,

we tried to make them whole again

and it wasn't easy.

Finally, in 2010, seven years after the investigation and 20 years

after the blood samples were taken, Arizona State University

agreed to pay $700,000 to 41 tribe members.

More importantly, they returned 151 blood samples.

The elders decided

to re-bury them at our sacred mountain,

and we did it very early in the morning

before the sun came up,

and so we believe that

once we bury them, then they go with the sunrise.

Doing something like that in the side of a mountain with pinon trees

and sage brushes all over and just the smell of the early morning

and songs being sung,

you’ll never forget that.

But when trust is broken, there are always scars.

Closure is not an easy thing to find.

Blood samples were only returned

if there was a record that someone had given blood.

In the years between the study and the lawsuit, some records were lost.

So many people never got their blood back.

We buried an empty box

for the individuals that did not receive

their blood samples back, and that was me.

I was one of them.

You can almost hear the trust crumbling, can't you?

Linda Thielova is the Global Data Protection Officer

and head of Privacy Center of Excellence at OneTrust,

and when she heard Carletta’s story, she saw a series of big red flags.

Somehow nobody questioned

the ethics of exposing this

very sensitive information about a group of people.

The researchers zoned in on what they were pursuing as scientists,

and they never looked up to consider the real-life impact of what they were doing.

Today, the number of companies and organizations that rely on data gathered from

the public is only expanding, but do we know how to safeguard that data?

It's about so much more than the right tech and following the letter of the law.

The laws that we have to follow when it comes to privacy,

they're actually built around

a lot of principles, so they're telling us to make sure

that we are incorporating transparency into what we're doing

and thinking about privacy when we're starting a project or

when we're onboarding a new vendor or when we're collecting data.

Getting your privacy compliance right is sometimes seen as a hassle or a roadblock,

but we forget about the powerful long-term benefits.

You start building a relationship with the people whose data you have,

and you can actually gain business value from that because people who trust

you are more likely to be your customers and they're more likely to share

more information with you.

Taking data without proper consent

or failing to guard it is the surest way to turn off

the very people whose data you rely on, and that's especially true

with biological data, like the Havasupai blood samples.

That is the type of information which is so unique to you.

If somebody steals your password, well, yeah, you can get a new one, but

what are you going to do if they misuse your blood samples?

The work Linda's describing really begins

and ends with consent, but consent on its own isn't enough.

It has to be informed consent.

Does the customer, or in this case a research participant, understand

what they're handing over?

The bar for consent is even higher when we're talking about bio-data

like blood samples.

In some cases, the researchers at Arizona State

University were relying on oral consent.

Many Havasupai, including Carletta say they weren't

given a written consent form at all, and if your business does that,

you are tainting your project right out of the gate.

The fact that the ASU researchers used oral consent,

that just gives me privacy

compliance goosebumps because the burden rests on you to prove

that you have ticked all the boxes in informing the person.

You are more likely than not, 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, for example, for those research purposes.

Those who did receive a written consent form signed something incredibly broad.

As we heard earlier, the consent forms said that the blood samples could be used

to study the causes of behavioral/medical disorders.

It gave ASU researchers carte blanche to study almost anything they wanted,

but real consent requires transparency and it requires you to be specific.

It just blows my mind frankly how

the transparency gap kept increasing.

They never said how long or for

which specific projects they'll be using the blood samples.

If the people don't know what they're consenting to, there is no transparency.

Only those relationships which have transparency in them

can be fully trusting relationships.

We're starting to see that consent isn't cut and dry.

It's something you have to proactively

design and build, and that means meeting subjects where they are.

In the case of the

Havasupai, written consent forms in English may have been inadequate

because English is a second language for many tribal members.

Which is something I can heavily relate to.

Scientific language expects

quite a high tier of understanding, and that's something that is not a given

for non-English speaker and maybe someone who isn't university educated.

You have to go the extra mile to bridge that gap and to present it

in a very comprehensible manner.

This doesn't just apply to extreme cases

like gathering blood from a historically disadvantaged tribe.

Every business should customize consent communication to all different groups

they interact with.

I think that's one thing that businesses get wrong.

They have this sort of template language and it just can’t be copy

pasted across all relationships and all use cases.

Additionally, consent often requires multiple check-ins,

especially if the parameters of your work change over time.

Companies can assume one piece of text

or communication is enough to create transparency

and to inform the typical person

of what they need to know to get consent.

It's never enough for sensitive type of data

to just have one touch point.

If the researchers at Arizona State had taken consent more seriously,

they may have avoided a related problem, violations

to the Havasupai privacy.

Their blood samples were used to produce studies on incest

and schizophrenia, sensitive and stigmatizing topics.

Researchers likely thought because no names were attached to these studies,

they had taken sufficient measures to protect individual tribal members

from negative associations and anonymize the Havasupai’s

personal data, but it wasn't enough.

If you don't have a good understanding of which subset of your data

actually qualifies as personal data, you're in trouble.

It's not enough to consider individual identifiers.

You also need to consider indirect or

group identifiers.

Remember, every blood sample was drawn

from a single indigenous tribe with a population of less than a thousand.

If a group is so small, then the data,

it is according to more and more laws globally,

almost being considered personally identifying information, and

so even though they never really shared

specific identifiers like people's names,

the fact that you are a tribe member

means that it's very easy to pin

all of the research findings onto you.

In other words, group data becomes personal data

when the sample size is small and lacks diversity.

Therefore, privacy is endangered even if names and other

traditional personal identifiers are hidden.

If you are identified as a member of the group,

any inferences for that group will automatically be pinned on you,

so you are no longer just a number.

Linda's point is not theoretical.

The California Consumer Privacy Act defines information

tied to an entire household as personal information.

They recognize that cross-referencing sets of seemingly

anonymous data can expose details about individuals.

In the Havasupai case, no cross-referencing was required.

The set of data was so homogenous and small that every tribal member

was now associated with taboo subjects against their will.

That means that this is not

just your regular run-of-the-mill privacy

data breach, but you dealing with a major impact.

Emotional harm is more of a

cultural and spiritual violation.

You are dealing with a breach of trust on the individual level,

but you are also dealing with a breach of trust of a whole tribe

in the context of the colonialist history.

The consequences of betraying trust with the Havasupai were obviously huge,

but protecting privacy doesn't have to be complicated.

If you are following one rule for privacy clients,

you want to make sure that you are not doing something

that the individuals, if they found out about it,

they would be unpleasantly surprised what you're doing with their data.

Linda suggests using a privacy impact assessment

or a PIA to think through any data collection you do.

A PIA defines what kind of data you're gathering,

why you are gathering it and how you're using it.

It's also a way to discover potential risks in advance,

and it's an ongoing commitment.

You are supposed to revisit your privacy impact assessments

regularly just to check if there is potential difference

between what you set out to do and what you’re actually doing with data.

A good PIA can save everyone a lot of grief, but it has to be done

proactively.

That means gathering input from actual stakeholders.

In this case, the PIA would require you

to have somebody like

a representative of the Havasupai tribe

actually read the project outline

and confirm throughout the PIA process

that they actually understand the consent the same way you understand it.

You need that diversity because otherwise

you're blind to those weak spots.

What Linda's describing when she talks about the importance of informed consent

and privacy is really a kind of care taking.

You do not, as a business, own someone else's data.

People own their own data.

You've only been entrusted with it.

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.

Around the world, laws have begun to reflect that attitude, but building

consent and privacy into data collection is about much more than legal compliance.

Having a high bar for privacy and consent in a company

means that you are able, as a business,

to really build trust.

So could be you get more data from them, could be you get longer relationships

with them, but the bottom line is you are building

meaningful relationships with the people whose data you have.

When Havasupai settled

their lawsuit with ASU, the New York Times reported that it was the first time

individuals had been paid for the misuse of their DNA.

The value of personal data is changing, so being a trustworthy

steward of that data is more important than ever.

Carletta and her tribe have shown that people are rightfully starting to demand it.

We don't want other indigenous

groups to go through what we went through and the distrust

that we had to go through, but also it united my family,

it united my community to be strong together

and have one voice.

Informed consent and privacy are the pillars of data stewardship.

The story of the Havasupai teaches us that you need to explicitly state

what data you're collecting, how it's being used,

and confirm that both are understood by everyone involved.

You also need to consult with data stakeholders

to ensure you don't have any privacy blind spots.

As we just heard, what constitutes personal data and a breach of privacy

can be more complicated than you think.

But when you prioritize consent

and privacy, you build trust with stakeholders,

gather better information, safeguard your company,

and most importantly, protect those who gave you their data.

I'm Shalene Gupta, and this

is Trustonomy, an original podcast from OneTrust.

Thanks for listening.