Project Nightingale: The Intersection of Medical Ethics and Engineering

In recent years, AI and machine learning have taken hold in almost every industry, as tech giants search for ways to improve efficiency and personalize the user experience. Nowadays, online advertisements always seem to know exactly what to sell, and Siri asks why the user is running late to school, even if it isn’t on the calendar. These innovations that impact daily life are to be expected in the world of big data, but at some point, there has to be a line. For many, that line encompasses data privacy and user anonymity, and no industry is more susceptible to crossing it than healthcare. In the case of the Google-Ascension Nightingale Project, this is exactly what happened.

The year was 2019, and Google was working with private healthcare system Ascension to collect patient data in the hopes of using their AI technology to enhance the healthcare sector. Such an algorithm, meant to individualize patient care, could be used to predict and find patterns that could lead to better treatments and understandings of common illnesses (Anonymous para. 2): something that the world would certainly benefit from. However, though their original intentions may have been noble, the program itself, titled “Project Nightingale” was a massive data transfer of practically all of Ascension’s records, including patient data from 2,600 medical centers and hospitals–at least 50 million people [1]–to Google. This may have been understandable if the information was properly anonymized or could not be traced to any individual, but in fact, no de-identification procedure was followed—even names were left in [1]. The worst part was that both doctors and patients, the people whose personal information was at risk and being leaked, were not notified at all, meaning they never consented to this breach [1]. And if not for a concerned whistleblower, one of 150 Google employees who had access to (and may have downloaded) this sensitive information [2], the transfer may have concluded without anyone finding out.

In the wake of the whistleblower complaint and immediate public backlash, both Google and Ascension immediately tried to dismiss concerns, saying that it was “standard industry practice” for healthcare providers to work on and share medical data with contracted tech companies, even without the explicit notification of patients [2]. They even cited the Health Insurance Portability and Accountability Act (HIPAA)–the most major legislation concerning medical privacy in the United States–and claimed to follow it strictly, implementing precautions for tight data security and protection [2].

Clearly, the companies were careful to follow all legal regulations, but ethics is another issue. According to Schneble, et. al, the aforementioned “standard industry practice” is widely regarded as a loophole in HIPAA (sec. “Complex Legal Regulations”), as the disclosure of personal data to outside business associates is an ethical dilemma in itself. Instead of examining and reexamining the laws, corporations should adhere to and first consider the ethical standards that are commonplace throughout the industry they are dealing with—for medicine, this can be traced all the way back to the Hippocratic Oath, a set of standards from Ancient Greece that most medical professionals still try their best to follow. Doctor-patient confidentiality is a central tenet of the Oath [3] and remains part of the current American Medical Association Code of Medical Ethics—not just for doctors but for anyone dealing with sensitive, patient-specific information. By proceeding with Project Nightingale, Google and Ascension–one trying to enter the healthcare sector and the other long in the center of it–violated the Hippocratic Oath and the AMA Code of Medical Ethics.

Furthermore, the engineers at Google went against their own ethical standards: the National Society of Professional Engineers Code of Ethics, specifically “Avoid deceptive acts”. By disclosing confidential patient information without notifying or receiving consent from those who were made vulnerable, the engineers essentially deceived these people and did not uphold the “highest standards of honesty and integrity” that are required by the Code. The Software Engineering Code of Ethics and Professional Practice specifically mentions data privacy in the section on only acting in public interest and notes in the “Product” section that all products should “respect the privacy of those who will be affected by that software”. Perhaps more than any other set of standards, this violation is the most clear and relevant to the situation and should have been prioritized in Project Nightingale.

With the possibility of innovation and new discoveries hanging over their heads, Google and Ascension allowed their ethics to be compromised and suffered the consequences, losing the confidence and trust of both employees and customers. This era of big data is only beginning, so it is important for ethical guidelines and the laws, themselves, to be reexamined and clarified before more people are put at risk. Regardless of the purpose, people should be notified if their data is being used or transferred to other parties instead of finding out far after the fact via a whistleblower—or not at all. In their analysis of the situation, Schneble, et al. suggest that much of the controversy could have been avoided if the data was made anonymous, not just by removing the names but via k-anonymity, a procedure that ensures the remaining information is obscure enough not to be easily discerned [4]. In the future, this practice should be made commonplace so that advancements can be made while respecting privacy and the public interest. There is no need for innovation to stop, but without following ethical procedures, engineers risk losing credibility and, worst of all, actively put others at risk with their work. This undermines the motivations of so much of engineering, to do good, so it is essential that ethics are followed and respected.

References

[1] Pilkington, E. (2019, November 12). Google’s secret cache of medical data includes names and full details of millions – whistleblower. The Guardian. https://www.theguardian.com/technology/2019/nov/12/google-medical-data-project-nightingale-secret-transfer-us-health-information

[2] Griggs, M. B. (2019, November 11). Google reveals ‘Project Nightingale’ after being accused of secretly gathering personal health records. The Verge. https://www.theverge.com/2019/11/11/20959771/google-health-records-project-nightingale-privacy-ascension

Health Insurance Portability and Accountability Act of 1996 (HIPAA). (n.d.). Centers for Disease Control and Prevention. Retrieved November 5, 2021, from https://www.cdc.gov/phlp/publications/topic/hipaa.html#:~:text=The%20Health%20Insurance%20Portability%20and,the%20patient’s%20consent%20or%20knowledge.

[3] Hippocrates. (n.d.). Hippocratic Oath (M. North, Trans.). Digital Hippocrates. Retrieved November 5, 2021, from https://www.chlt.org/hippocrates/oath/page.0.a.php

National Society of Professional Engineers. (n.d.). NSPE Code of Ethics for Engineers. National Society of Professional Engineers. Retrieved November 5, 2021, from https://www.nspe.org/resources/ethics/code-ethics?gclid=CjwKCAjwxOCRBhA8EiwA0X8hi9L9ESq4zm6nreE0uKr9Yq_lnOjKI__nqgIAruwyzA-u2b5tJgl8TRoCUg8QAvD_BwE

[4] Anonymous. (2019, November 14). I’m the Google whistleblower. The medical data of millions of Americans is at risk. The Guardian. https://www.theguardian.com/commentisfree/2019/nov/14/im-the-google-whistleblower-the-medical-data-of-millions-of-americans-is-at-risk