Victims and Vectors: The Ethical Implications of Covid-19 Surveillance Testing
Due to the fact that the field of bioethics, or the study of ethical issues as they relate to biomedical research, emerged at a time when infectious disease was not of high pertinence, there exists a lack of guidance for how to ethically conduct associated, health-related interventions.1 This issue came to fruition in the months following March of 2020, as the Covid-19 pandemic evolved and considerable opposition to public health interventions such as mask mandates and vaccinations commenced. Now, in a society in which mask usage and vaccination are more normalized, continued efforts to maintain public health have turned to the surveillance testing of asymptomatic individuals. From confidentiality, to autonomy, to informed consent, to familial risks, to a clinician’s duty-to-warn, there is an array of ethical implications associated with Covid-19 testing as the pandemic slowly progresses towards the endemic stage. For the sake of brevity, this blog post will focus on the ethics of obligatory testing as well as the potential threat of DNA privacy associated with the collection of testing samples—both as they pertain to testing in the United States and Duke University.
Though medical ethics places an emphasis on the autonomy of individuals, the principle of obligatory testing seems to emphasize the protection of others—at least, on the surface level. Significant evidence exists that surveillance testing of asymptomatic individuals aids in identification of infectious individuals and subsequent action to minimize the infections of others. In a study conducted by researchers here at Duke, they found that 51% of positive Covid-19 cases tested early last fall were among asymptomatic individuals. Later tests, conducted as a result of contact tracing, comprised 27.4% of identified infections on campus.2 These percentages serve as a testament to the number of infected individuals without symptoms and the capacity of surveillance testing to quarantine those who pose a risk to the university’s health. Although these results are from the fall of 2020, they have significant implications for development of strengthened testing frameworks across the nation. In practice, implementation of surveillance testing has enabled Duke Health to identify clusters of Covid-19 cases and act promptly to avoid risk to other students. In a report by local news CBS17 last fall, an October 7th cluster of undergraduate students was first identified through an undergraduate surveillance test. This “index patient” was then linked to eight other students who underwent contact-tracing based testing and had positive results. Thus, a basis for protecting others from potential infection through testing is buttressed by not only research, but history.
However, when opposition rises to mandatory testing, and one too many Duke cards are deactivated for the weekend after a missed Friday test, the question arises as to whether benefits reaped from wide-spread implementation of a safety measure warrant its mandate. In the words of Biomed Central’s ethicists, “Even if it is a moral duty for instance to be tested…moral duty does not immediately translate into a justification of government enforcement of these measures.” Where the justification lies, rather, is in the absence of alternative methods to adequately improve public health with other voluntary measures.4 Duke University recognizes that optional surveillance testing would not yield the same number of collected samples, even with a large population of altruistic, public health concerned students. This, in turn, would culminate in a lower number of asymptomatic cases being identified and a subsequent higher rate of Covid-19 transmission between individuals. Though one might argue that students who accidentally forget a scheduled surveillance test or who don’t make it to the testing center in time face unfair harsh consequences, the looming consequences of restricted access to their residence halls or rejection in an attempt to buy food may be what it takes to ensure campus safety amid a pandemic.
At the level of the United States, in order to ethically justify testing mandates, the opposing risks of mandated testing must first be considered. For example, if a testing mandate is imposed in the presence of significant resistance, individuals may relocate themselves in order to evade said mandates. Evasive relocation, in itself, poses a larger risk to public health than if testing was obsolete, because potential carriers of the virus are then provoked to infect populations in other geographic areas. There also arises the ethical concern that a prevalence of positive Covid-19 tests in a certain geographic location leads to stigmatization of those individuals. Finally, issues emerge in consideration of the logistics of testing those in remote or rural areas of the country, where there is an absence of positive cases and testing facilities. Thus, national implementation of obligatory surveillance testing is not logically or ethically permissible at this time.
Duke student’s may ask themselves: When did I sign up for all of this mandatory Covid-19 testing? The answer, like many others, can be answered by the one and only Duke Compact. Per the Duke Compact, student’s are required to undergo surveillance testing at an average of one to two tests a week. Failure to sign the compact or comply with its standards results in restricted access to Duke’s campus and “may impact student status.”5 With the threat of student status, those who wish to remain students on Duke’s campus don’t really have the autonomy to choose noncompliance. Is this example of diminished student autonomy justified? From the perspective of Duke administrators and health researchers, the entire Duke community depends on each other to lower transmission rates of and vulnerability to Covid-19. Thus, individuals who sign the compact are not only protecting others from his or her potential asymptomatic infection, but they are protecting themselves from others in the community who could transmit the virus to them (which is an autonomous decision in itself). Still, is additional consent needed to collect nasal swabs than a simple electronic signature? Although one may argue that students never signed a consent form to agree to the collection of their biological samples, agreement to the Duke community standards is the form of consent for the routine procedure of testing. Another example of a health-related procedure that doesn’t involve an extensive, formal consent form is routinely getting blood drawn. There exists an agreement, mainly through the nonverbal consent of holding one’s arm out, that the health professionals handling the samples will minimize any potential harm to the individual. Yet, despite the fact that surveillance testing policies are well known, students might not consciously understand Duke’s new Covid-19 data sharing policies.
Essentially, Duke informs its contact tracing system with a multitude of data. This includes information such as the wireless access points at which individual’s phones and computers connect to Duke Wifi, the locations at which students make purchases with their DukeCards, housing assignments on campus, class rosters, and vaccination status. Then, in addition to aiding contact tracing, data is used to inform data modeling for pool testing, compliance with the Duke Compact, and even building density modeling.6 As discussed earlier, this information ensures that contact tracing is streamlined, yet privacy concerns accrue. Yes, the data points to which individuals were potentially infected by someone who tested positive, but it can also reveal which study spots on campus someone hops onto Duke Sakai from or when someone purchases their newest collection of Duke merch with Flex points. From a more serious standpoint, one might wonder whether breaching of locational privacy is a significant threat associated with participating in Duke’s data collection. However, due to Duke’s data safety measures, any threats to locational privacy through Duke’s data collection are much less significant than any tracking that is already occurring through modern mobile phones.
Similar privacy concerns arise in consideration of what data can be collected just from one nasal swab. In what Ricki Lewis, a prolific science writer and genetic counselor, calls “super swabs,” is not only Covid-19 virus particles and viral genetic material, but also human genetic material.7 Though present in miniscule amounts, host (human) DNA is present in each surveillance nasal swab within human cells that line the nose and throat. After a little PCR, a procedure that amplifies the amount of DNA, and Low-Coverage Whole Genome Sequencing, human DNA sequences can inform research about which genes correspond to different levels of Covid-19 susceptibility, the host immune response, and even genealogy studies that point to certain populations at higher risk. The chief operating officer of the Duke Human Vaccine Institute was quoted in an article by the Duke Human Vaccine Institute last year explaining, “We’re not jeopardizing any clinical testing needs by testing 10,000 people a week. We’re not taking 10,000 tests away from people who need them in a hospital setting because they’re symptomatic.”8 Due to the fact that asymptomatic testing occurs outside the health system, researchers can capitalize on the data from samples to investigate how the virus evolves (through viral RNA) and how different individuals may have increased susceptibility to Covid-19 (human DNA) without jeopardizing individuals experiencing symptoms by subjecting them to clinical research.
The problem with modern biotechnology and the presence of DNA in Covid-19 testing swabs is that it can pose an immense threat to individual privacy. Today, researchers can identify an individual by their DNA even in the absence of a reference sample through the use of a device known as MinION.9 Should this information be leaked, methods also exist to identify individuals’ susceptibility to an array of genetic-based diseases simply from their genetic code. As one example among many, a testing swab in the hands of the wrong researcher could be used to match the sample with an individual, who then may experience stigmatization due to other genetic information available in their genes. Fortunately, Duke has extensive policies in place to ensure maximum security of information collected through surveillance testing. This includes, “...limited access (only the lead contact tracers and data modelers can access the Azure data), data encryption, which only allows data access with a specific key, and firewalls, which monitors incoming and outgoing networks.”10 With these protections, individuals can have assurance that their samples and genetic information will remain confidential. Still, the possibility of data breach always remains.
Conversations about the potential threats surveillance tests pose to DNA privacy across the US began in January of this year. Arthur Caplan from the division of medical ethics NYU spearheaded this discussion with his commentary on how confidentiality can be maintained. This was in response to a January lawsuit in which individuals asked a judge to suspend mandatory testing. The plaintiffs rooted their argument in the fact that important health data unrelated to Covid-19 can be obtained from testing swabs. Though this claim stems from a logical place of concern, counter arguments emphasize that many Covid-19 testing facilities specify that samples are destroyed and do not undergo sequencing; in other words, just because samples can be used to obtain a plethora of valuable health information doesn’t mean they are. In his short video released on Medscape, Caplan identifies a more pertinent, actionable issue for our country. He explains that the United States needs to alter their current testing efforts in order to more effectively facilitate selective shutdowns in areas with a high prevalence of Covid-19 and restore schools back to their previous educational capacity.11 Developing procedures to achieve these goals will likely involve much more transparency from testing facilities. Individuals should have assurance that their samples will be destroyed following testing for Covid-19 and that their genetic information will not be passed on to a third party, such as a pharmaceutical company that wants to study which genes influence Covid-19 susceptibility. One way to accomplish this would be to increase the use of pool testing, a system Duke utilizes, so that testing kits contain a mixture of DNA samples and individual genetic codes are much more difficult to profile.9 Like the existence of surveillance testing policies, the presence of DNA in Covid-19 test nasal swabs involves numerous ethical concerns.
At its core, this ethical debate is rooted in whether one values individual autonomy, health, and privacy over group benefits to health. Whether it be compliance with surveillance testing policies in order to protect public health or agreeing to donate biological samples for research that will benefit society and science, the health policies of the Covid-19 pandemic petition for unparalleled levels of altruism among individuals. As articulated by the novel The Patient as Victim and Vector: Ethics and Infectious Disease, models of minimizing infectious disease present a conflict between a health care professional’s duty to warn a patient of their infectious status and their duty to maintain patient confidentiality.1 It is through this conflict that we can examine individuals who undergo testing as vectors for disease transmission but also as victims of potentially diminished privacy. In consideration of this and the other value conflicts discussed in this blog post, much more transparency is needed from surveillance testing institutions in regards to sample storage and data access policies. This information, coupled with the provided educational context of how surveillance testing informs public safety measures, will minimize individual insults to autonomy and confidentiality.
Edited by: Sara Be
Graphic Designed by: Eugene Cho
1) Battin, M. Pabst. The Patient as Victim and Vector: Ethics and Infectious Disease. Oxford University Press, 2009.
2) Denny TN, Andrews L, Bonsignori M, et al. Implementation of a Pooled Surveillance Testing Program for Asymptomatic SARS-CoV-2 Infections on a College Campus — Duke University, Durham, North Carolina, August 2–October 11, 2020. MMWR Morb Mortal Wkly Rep 2020;69:1743–1747. DOI: http://dx.doi.org/10.15585/mmwr.mm6946e1
3) Desk, CBS 17 Digital, and Crystal Price. “Duke University Reports First COVID-19 Cluster among Students at off-Campus Apartment Complex.” CBS17.Com, CBS17.Com, 16 Oct. 2020, https://www.cbs17.com/news/local-news/durham-county-news/duke-university-reports-first-covid-19-cluster-among-students-at-off-campus-apartment-complex/.
4) Hansson, S.O., Helgesson, G. & Juth, N. Who should be tested in a pandemic? Ethical considerations. BMC Med Ethics 22, 76 (2021). https://doi.org/10.1186/s12910-021-00640-4
5) “The Duke Compact - Duke United.” United, 29 June 2021, https://returnto.duke.edu/the-duke-compact/.
6) “Data Usage during COVID-19 - Duke United.” United, 27 Apr. 2021, https://returnto.duke.edu/community-responsibility/data-usage-during-covid-19/.
7) Lewis, Ricki. “Genetic Clues in the Goop of a Covid Swab.” DNA Science, 12 Nov. 2020, https://dnascience.plos.org/2020/11/12/genetic-clues-in-the-goop-of-a-covid-swab/.
8) Schramm, Stephen. “Keeping a Close Watch on Covid-19 with Surveillance Tests.” Duke Human Vaccine Institute, 20 Aug. 2020, https://dhvi.duke.edu/keeping-close-watch-covid-19-surveillance-tests.
9) Hollenstein, M., Naccache, D., Rønne, P. B., Ryan, P. Y., Weil, R., & Yifrach-Stav, O. (2020). Preservation of DNA Privacy During the Large Scale Detection of COVID-19. arXiv preprint arXiv:2007.09085.
10) Breneisen, Emily, et al. “Collection and Use of Students' Personal Data for Covid-19 Response at Duke University .” Tech Policy @ Sanford, Sanford School of Public Policy, 13 Apr. 2021, https://sites.sanford.duke.edu/techpolicy/2021/03/21/collection-and-use-of-students-personal-data-for-covid-19-response-at-duke-university/.
11) Caplan, Arthur.“Are Covid-19 Swab Samples a Threat to Your DNA Privacy?” Medscape, Medscape, 13 Jan. 2021, https://www.medscape.com/viewarticle/943487.