Beyond do no harm

1. Beyond do no harm

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2. Legal or ethical?

Ethical principles and regulations are closely related. Ethics revolve around shared ideas of right and wrong. They are informed by our society, the religion we may or may not follow, and the progress we make as we evolve as a civilization. Ethics are codes and guidelines, while laws may be used to enforce them. Ethical standards go above legal requirements. What is legal may not always be ethical. Let's see the harms of ignoring ethics while only considering legal compliance.

3. Lessons from the past

HeLa cells are the first immortal human cells that revolutionized cancer research. Medical scientists gathered them during a biopsy from Henrietta Lacks, a cervical cancer patient, without her consent. While the cell collection was helpful and legal for advancing research back in the day, Henrietta was not offered the choice of privacy, dignity, transparency, or the ability to exercise her agency. Another shocking example is the Tuskegee Syphilis Study which began in 1932 to study the effects of untreated syphilis when there was no cure. African American men were recruited and infected with syphilis. The men were not informed of the nature of the experiment and treatment options and were not asked for consent. More than 100 died, even though by the end of the study in 1972, a cure for syphilis was available. In both cases, no clear laws prevented such studies. Given the moral failures, it was a watershed moment for the scientific community to do better in the future. This led to publication and practice of influential ethics guidelines in research known as the Belmont Report.

4. Guiding ethical principles

The first guiding ethical principles from the Belmont report are based on do-not-harm and beneficence, where the risks to individuals are minimal while benefits to individuals and societies are maximized. Human participants should have the autonomy and agency to control how their data or samples are utilized. They need to be informed and their privacy and dignity preserved. They should be treated fairly, legally, and without discrimination. Organizations like IEEE and ACM released codes of conduct addressing data ethics aspects on the responsible use of data. However, there's still a lot of gap in practice. Let's see two examples.

5. Data ethics: Old problems new cover

In 2012, Facebook conducted a social experiment with 700,000 users, skewing their newsfeeds to more positive and negative content to test its influence on the emotions of the users. This was done without informing the users and without their explicit consent and didn't offer them the choice to opt out of the study. In 2019, Google partnered with Ascension to provide them with data storage and processing facilities. However, Google employees accessed the health data of 21 million patients without their consent or knowledge. Again, in both these cases, there were no major legal concerns. However, data protection laws are on the rise to enforce the otherwise "good to have" ethical guidelines.

6. Encoded data ethics in laws

Data protection laws, such as Europe's General Data Protection Regulation or GDPR and America's California Consumer Privacy Act or CCPA embed several data ethics principles-Not limited to data privacy, data security, transparency, informed consent, non-discrimination, and accountability. And mind you, these regulations are enforced. For instance, GDPR breaches can cost companies up to EUR 20 million or 4% of the worldwide annual turnover, whichever is higher.

7. The business case for data ethics

That's yet another reason to adopt data ethics because today's ethics could be tomorrow's laws. For instance, America's Federal Trade Commission regulator's plan to destroy algorithms and the Italian privacy regulator's decision to temporarily ban ChatGPT due to data privacy issues are examples. Companies can build a trustworthy reputation for their clients and employees with data ethics. Data ethics power responsible innovation. For example, LinkedIn, with its Economic Graph initiative, partners with world leaders to analyze labor markets and recommend policy solutions to prepare the global workforce for the jobs of the future. It uses its vast user data to create features to provide better services for the users, but also provides valuable insights to policymakers and governments to identify and improve challenges like skill gaps, gender imbalance, and the future of work. Responsible innovation is even more significant when we talk about data and AI.

8. Let's practice!

Great! Now let's practice!

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