Preface
Every year worldwide, the 10th of December marks Human Rights Day. It observes the anniversary of one of the world’s most ground-breaking global pledges: the Universal Declaration of Human Rights (UDHR). This landmark document enshrines the inalienable rights that everyone is entitled to as a human being – regardless of race, colour, religion, sex, language, political (or other) ideology, national or social origin, property, birth or other status. Proclaimed by the United Nations General Assembly in Paris on the 10th of December 1948, this Declaration set out, for the first time, which human rights are fundamental (and universally protected).
To mark this day, the Commission of Diversity and Inclusion (CD&I) embraced the challenge of writing an opinion piece about the importance of human rights in science. The following paragraphs are the result of our research and personal reflection.
A Historical Overview of Human Rights in Science
Human rights in scientific research have evolved significantly over time, shaped by historical events and ethical failures that underscored the need for rigorous standards and protections for research participants in experimental research. As with all topics, understanding the historical context will help us to comprehend the state of the art. Everything started in the aftermath of World War II when the Nuremberg Trials (1945-1946) exposed horrific violations of human rights committed by Nazi medical doctors and researchers, who conducted inhumane experiments on prisoners without their consent. The acknowledgement of these abuses led to the formulation of the Nuremberg Code in 1947, which established ten ethical principles, including the necessity of voluntary consent, the importance of performing scientifically valid research, and the imperative of minimising harm. Surprisingly, this was not enough to change the scientific paradigm. In the United States of America (U.S.), after World War II, we point to two events worth our attention. Conducted by the U.S. Public Health Service, the Tuskegee Syphilis Study (1932-1972) involved the unethical treatment of African American men with syphilis, who did not have access to treatment even after penicillin became widely available. A different study, conducted at the Willowbrook State School (1956-1970), involved deliberately infecting children with hepatitis to study the disease.
These violations paved the way for various institutional and legal frameworks designed to protect human rights in research. A widely known example is the Declaration of Helsinki (1964), developed by the World Medical Association (WMA). This document set forth ethical principles for medical research involving human subjects. It emphasised the importance of informed consent, the need for scientific justification of a specific type of research project, and the obligation to ensure the welfare of participants. For curious readers, we also point to the Belmont Report (1979) and the Common Rule (1991).
Today, the legacy of past abuses continues to influence the field of research ethics, prompting ongoing discussions about the role of consent, equity, and participants’ rights. Naturally, this context fostered the development of international policies to ensure standard guidelines in scientific research. In the next section, we delve a bit more into this topic.
Integrating Human Rights in Scientific Research
Nowadays, various national and international frameworks aim to ensure ethical conduct and protect human rights within research. Science is moving from an autoregulation (i.e., the scientific community makes the rules and audits them) into a hetero-regulation (i.e., state authorities make the rules and their audit) status. Interestingly, these regulations usually start in health/clinical-related research and then permeate other fields. At an International level, we highlight the International Ethical Guidelines for Health-related Research Involving Humans (2016), developed by the Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO), and the Universal Declaration on Bioethics and Human Rights (2005), developed by UNESCO. These documents address ethical issues related to life sciences and biomedicine, promote respect for human rights in scientific research, and emphasise the importance of informed consent, cultural diversity, and the need for equitable access to the benefits of scientific research.
Focusing on INESC TEC, given that our institution deals with computer science, data and technology, we believe the community should know more about the European Union General Data Protection Regulation (GDPR) (2018). Although primarily focused on data protection, GDPR has significant implications for research involving human subjects, especially regarding consent, data privacy, and the right to withdraw from studies. Besides, given the multidisciplinary dimension of our research (especially with health or clinical stakeholders), it is not uncommon if, at some point in the careers of INESC TEC’s researchers, they come across the Clinical Trial Regulations by the European Medicines Agency (EMA) and the U.S. Food and Drug Administration (FDA), or have to deal with an Institutional Review Board (IRB) or Ethics Committee.
Fundamental Principles of Human Rights in Research
As our society moves forward, so does science and ethics. It is of utmost importance that Academic and Research Institutions ensure that their researchers are acquainted with the several principles of human rights in research: 1) Informed Consent, which states that individuals must be fully aware of the nature of the study, potential risks, and their right to withdraw at any time, without any repercussions; 2) Privacy and Confidentiality, that says that researchers must ensure that personal data is kept confidential and used solely for the intended research purposes; 3) Equitable Treatment, that demands that all participants should be treated with fairness and equity; 4) Beneficence and Non-Maleficence, that reminds researchers they have a moral obligation to maximise benefits and minimise harm to participants; and 5) Scientific Integrity, that states that adhering to ethical standards enhances the validity and reliability of research outcomes.
Epilogue
Pursuing scientific knowledge must be linked to a profound respect for human rights. By acknowledging the historical context of ethical violations in research and prioritising the dignity and rights of individuals, researchers can ensure that their work contributes positively to society. Upholding these principles fosters trust, integrity, and the credibility of scientific findings. As the research landscape evolves, it is imperative to maintain a steadfast commitment to ethical guidelines and human rights, adapting policies to address emerging challenges. This collaborative effort between policymakers, researchers, and institutions is essential to safeguard study participants’ rights and ensure that science serves humanity. Upholding human rights in global research is crucial. Researchers must be culturally sensitive, engage with communities, and address power imbalances. Emerging technologies and big data pose new ethical challenges, promoting the need for responsible data practices. International collaboration requires harmonised ethical standards. Ultimately, research should benefit all, especially marginalised groups.
Do you feel you are aware of and vigilant regarding human rights issues? Would you know what you could/should do if you witness any violation of human rights?
Commission of Diversity and Inclusion (CD&I)
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