Tag Archives: Rights

Key Ethics Term: Right Not to Know

Though we often talk about a patient’s right to be informed about the risks and benefits of treatment options or about prognosis, there is a correlative right not to be so informed (or not to know).

This right has become particularly prevalent in the field of genetics, where patients could come to know that they are at risk for a serious disease for which there is no effective treatment (e.g. Huntington’s disease). Under such circumstances, some patients may decide that they do not want to know their risk and respecting that choice may be both a matter of respecting autonomy and ensuring beneficence.

However, the existence of this right is contested. And even for those who agree that there is such a right, what that right entails is complicated by risk to the patient (e.g. some patients may ask not to know even when there are potentially effective treatments) and by risk to others (e.g. when genetic testing reveals genetic information that would affect family members).


For further reading…

  • Berkman and Hull (2014). The “Right Not to Know” in the Genomic Era: time to Break From Tradition? Am J Bioeth, 14(3):28-31.

  • Gilwa et al (2015) Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants. Genetics in Medicine, Nov 2015. https://www.nature.com/gim/journal/vaop/ncurrent/pdf/gim2015149a.pdf

Adherence in Treatment of Adolescents: Cystic Fibrosis Case Study

Review the 4-box explanation sheet and complete a blank 4-box method worksheet while reading Ryan’s Case.  

Before delving into the case you may find it useful to read more about the following terms:

While reading the case consider the following:

  • Imagine empathizing with each stakeholder.  Consider their different or shared beliefs, emotions, and values.
  • Can you frame 1-2 ethical issues that arise in this case in a single sentence?  For example, you might find that one professional obligation (e.g. benefiting the patient from a medical perspective) seems to conflict with another (e.g. respecting the patient’s autonomy).  

And remember your Ethics Toolkit if you’re feeling lost or want to dig deeper… (we’ll go over this in Week 1 of EHM, but feel free to explore it now)


If you are interested in further reading:

Lessons from Tuskegee, Havasupai, and HeLa for Health Research Today

In this module, we review three landmark cases for U.S. research ethics history and explore their impact on contemporary research practices.  Today, it is routine to use residual samples collected for clinical practice, or medical records, to answer research questions. We often do this with waivers of consent (without asking or informing patients). This is changing, and our history helps us understand why….

Start by reviewing the Ethics Case Analysis Toolkit

Remember some of the fundamental ethics concepts we’ve covered so far:

Read this seminal article on the Tuskegee Syphilis study (the study was originally/officially titled “The Effects of Untreated Syphilis in the Negro Male”), which provides an overview of the study and the injustices found within the study itself and its aftermath…

Baker S.M., O.M. Brawley, L.S. Marks. Effects of Untreated Syphilis in the Negro Male, 1932 to 1972: A closure comes to the Tuskegee study, 2004. Urology (2005): http://usrf.org/uro-video/Tuskegee_2004/Tuskegee_study.html [NOTE: Embedded videos give you a bit more background and are recommended, but not required.]

As you’re reading, consider the following:

In 1932 when the U.S. Public Health Service Study of Untreated Syphillis began, there was no effective treatment for syphilis. When penicillin became available in the 1950s, researchers ‘justified’ their decision to continue the observational study without treatment because they wanted to make good on the time the men had already invested in the study.  In their mind, good science required they continue to get the longitudinal data.  They justified their decision further noting that men in the study were from poverty and did not have access to healthcare without the study.

  • How were the research subjects harmed or otherwise treated unjustly? For instance, what obligations or rights were violated? Which virtues were neglected or failed?
  • Can you imagine similar reasoning being used now, with other studies, other participants?

Then take a look at a more contemporary piece in the NYTimes, which focuses on a recent manifestation of similar norms…

Harmon A. Where did you go with my DNA? New York Times (2010): http://www.nytimes.com/2010/04/25/weekinreview/25harmon.html?_r=0

As you’re reading, consider the following:

In 1951, clinical researchers grew cells from Mrs. Henrietta Lacks’ cervical cancer biopsy. These cells became an immortal cell line that contributed to several ground-breaking health innovations, including the polio vaccine. Mrs. Lacks was never asked to contribute to research or told about the cell line. In keeping with the ethics of the day (and now), consent was not required to use residual tissues for research purposes if de-identified so no regulations or laws were broken.

  • How was Ms. Lacks harmed?
  • How was the Lacks family harmed?

Here is a second more contemporary piece in the NYTimes…

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

As you read, consider…

In 1999, an Arizona State University researcher approached the Havasupai tribe with a proposal to study genetics of diabetes, which was a condition from which many in the tribe suffered. After building relationships with tribal leaders, they gave consent for the blood draws and genetic study of diabetes, in hopes that something could be found that would help their people. The genetic analysis did not find anything specific so the samples were de-identified and frozen. Later, other researchers including graduate students in the research group used the samples for other research, such as migration patterns, schizophrenia, and inbreeding.

  • How were the Havasupai people harmed by these additional uses of their samples?
  • What could be done differently to bridge the gap between research regulations and what the tribe needed for ethical research conduct?

Finally, WATCH this TED Talk on the demand for diversity in genetic research and why current research is insufficient: Fox K. Why genetic research must be more diverse. TED Talk, February 2016.

As you’re watching consider…

  • What does Keolu Fox tells us about how medical practitioners and researchers can make research practices more trustworthy and respectful?
  • Can you think of other ways to support these ethical obligations going forward?

As always, your Ethics Resources are there to help guide your reasoning in these complex moral issues. Remember to push yourself by considering how a skeptic might respond.


For further investigation…

You can see the OHRP Guidance on Research Involving Coded Private Information and Biospecimens: http://www.hhs.gov/ohrp/policy/cdebiol.html.

The Belmont Report is a thorough report on the ethical principles and guidelines for research with human subjects. It was a significant interdisciplinary effort in response to grievous harms on human subjects as seen above. You can find it here: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html.