Shaolin Data Services

[Note on Brand Evolution] This post discusses concepts and methodologies initially developed under the scientific rigor of Shaolin Data Science. All services and executive engagements are now delivered exclusively by Shaolin Data Services, ensuring strategic clarity and commercial application.

In the complex world of data science and human-centered research, there are no shortcuts. The Institutional Review Board (IRB) exists as a bulwark against the reoccurrence of ethical atrocities, with the singular purpose of protecting human rights and welfare in any research endeavor. We must not be under any misconception: having the IRB is a monumental improvement over the pre-Nuremberg research era (Commissioner, 2019).

However, the IRB is a safeguard, not a guarantee. It is not an omniscient entity, and its approval is not a substitute for a researcher’s own moral compass. The data confirms this. Between 2008 and 2016, out of 280 cases in the United States, 97% had repeated instances of serious ethical violations in medicine (DuBois et al., 2019). Despite the clear pattern, there were no readily identifiable events to facilitate the development of preventative measures. The problem is global, not just domestic. A Japanese hospital and research center was found to have a minimum of 158 studies proceeding in violation of ethics since 2013, with 156 additional studies conducted without the participants’ consent and with no way for them to decline participation (Zastrow, 2019).

Even in the modern day, with all the lessons of history available, ethical violations continue to occur. These more recent events are often less documented, as seen in the human rights violations within Immigration and Customs Enforcement detention centers (Ghandakly & Fabi, 2021). Years of ethical violations experienced by Native Americans were only revealed in a New York Times article, and while the perpetrators sought to make amends, the event underscored the absolute imperative for unwavering adherence to ethical practices and the principle of consent (Harmon, 2010). This problem is not confined to the United States. In Ecuador, a communication barrier spanning 40 years led to 68% of studies not seeking IRB approval and 71% not obtaining the consent of participants (Ortiz-Prado et al., 2020).

The lessons are clear: A researcher must be keenly aware of the past to prevent its recurrence.

The Digital Frontier of Ethical Risk

If the lessons of history are the grounds for our ethical discipline, then the digital age presents a new, largely uncharted battleground for our moral judgment. The lack of a “cyberspace Nuremberg” means that the ambiguity and difficulty of ethical decision-making remain a challenge for social reformation. In the digital world, ethically ambiguous data collection, even without physical harm, is as critical as invasive medical research.

Consider the case of a project titled “I Can Stalk U.” In this endeavor, a research team developed an automated system that collected metadata from photographs uploaded to social media platforms to determine the exact geographical location of the photos. By passively scanning publicly available data, the project was capable of displaying an image with an associated Google map of its precise location (Deibert & Crete-Nishihata, 2011).

This project proceeded without the consent or knowledge of the users, as obtaining it was argued to detract from the project’s purpose of raising awareness about the capabilities of surveillance software. It would be disingenuous to suggest that the scanned users happily consented to providing their data for a tool that readily assists in unwanted stalking. While the distinction between research that exposes privacy-invasive issues and a direct breach of privacy can be unclear, the associated risk is not mitigated simply because the subject is not immediately impacted at the time of the breach. This issue is only exacerbated by the surge of wearable technology and the need for new data protection and governance policies that effectively address data generated outside of traditional healthcare institutions.

The Researcher’s Mandate: A Moral and Strategic Imperative

In contexts that remain applicable in open domains, such as social media and other public forums, issues of consent, confidentiality, and the potential for harm must be weighed heavily against the knowledge to be gained from research (Whiteman, 2007). In essence, a researcher must continually inquire about their own and their team’s gains and losses concerning both knowledge and ethics, and they must be prepared for the consequences of their choices.

This is because ethics is not merely a set of rules; it is the normalcy of conduct that delineates acceptable and unacceptable behavior (Resnik, 2020). Therefore, ethics in research is a multifaceted entity with profound strategic value. Within a research environment, ethical norms encourage and distinguish the goals while being conducive to collaboration. Moreover, these norms ensure public accountability, which is essential for building support and trust in the endeavor. Lastly, this normalcy of conduct has the additional benefit of promoting other relevant social and moral values such as human rights, social responsibility, compliance with the law, and animal welfare.

In the end, while we have established the IRB as a necessary safeguard and have observed a historical record of violations in both the physical and digital world, the ultimate responsibility falls to the individual. A discerning researcher understands that the ethical imperative is not a hindrance to progress but the very foundation upon which meaningful and sustainable innovation is built.

Conclusion: The New Moral Enterprise

In the end, the history of research is a cautionary tale of what can happen when intellect outpaces ethics. While institutions like the IRB are a crucial shield, they are not an impenetrable one. The evidence is clear: ethical violations persist in medicine, in academia, and in the sprawling, uncharted territories of the digital world.

The ultimate authority, then, does not rest with a governing board but with the individual researcher. A wise researcher understands that ethics are not a hindrance to progress but the very foundation upon which meaningful and sustainable innovation is built. A commitment to human rights, social responsibility, and the principle of consent is not a moral concession; it is a strategic imperative.

At Shaolin Data Science, we believe that the pursuit of knowledge must be a moral enterprise. We do not simply build systems; we build trust. We guide our clients not only in what is technically possible but also in what is morally responsible, ensuring that their pursuit of insight is always grounded in the integrity and prudence that the modern world demands.

References

Barrow, J. M., Brannan, G. D., & Khandhar, P. B. (2022). Research Ethics. In StatPearls. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK459281/

Commissioner, O. of the. (2019, April 18). Institutional Review Boards Frequently Asked Questions. U.S. Food and Drug Administration; FDA. https://www.fda.gov/regulatory-information/search-fda-guidance-documents/institutional-review-boards-frequently-asked-questions

Deibert, R., & Crete-Nishihata, M. (2011). Blurred Boundaries: Probing the Ethics of Cyberspace Research. Review of Policy Research, 28(5), 531–537. https://doi.org/10.1111/j.1541-1338.2011.00521.x

DuBois, J. M., Anderson, E. E., Chibnall, J. T., Mozersky, J., & Walsh, H. A. (2019). Serious Ethical Violations in Medicine: A Statistical and Ethical Analysis of 280 Cases in the United States From 2008-2016. American Journal of Bioethics, 19(1), 16–34. https://doi.org/10.1080/15265161.2018.1544305

Ghandakly, E. C., & Fabi, R. (2021). Sterilization in US Immigration and Customs Enforcement’s (ICE’s) Detention: Ethical Failures and Systemic Injustice. American Journal of Public Health, 111(5), 832–834.

Harmon, A. (2010, April 21). Indian Tribe Wins Fight to Limit Research of Its DNA. The New York Times. https://www.nytimes.com/2010/04/22/us/22dna.html

Ortiz-Prado, E., Simbaña-Rivera, K., Gómez-Barreno, L., Tamariz, L., Lister, A., Baca, J. C., Norris, A., & Adana-Diaz, L. (2020). Potential research ethics violations against an indigenous tribe in Ecuador: A mixed methods approach. BMC Medical Ethics, 21(1), 100. https://doi.org/10.1186/s12910-020-00542-x

Resnik, D. B. (2020, December 23). What Is Ethics in Research & Why Is It Important? – By David B. Resnik, J.D., Ph.D. National Institute of Environmental Health Sciences. https://www.niehs.nih.gov/research/resources/bioethics/whatis/index.cfm

Whiteman, E. (2007). “Just Chatting”: Research Ethics and Cyberspace. International Journal of Qualitative Methods, 6(2), 95–105. https://doi.org/10.1177/160940690700600209

Zastrow, M. (2019). Japanese hospital uncovers flood of research ethics violations. Nature. https://doi.org/10.1038/d41586-019-01747-w