Question

Whose Body?

questions

Study Discussion Questions

1. Whose perspective do you agree with—Sandy's or Grace's? Why?
2. Do you think there are important differences between the cases of Henrietta Lacks, Jean, and the Havasupai? Explain your answer.
3. Are there cases of advances in medical knowledge that do not, at least potentially, threaten to violate the privacy of individual patients?
4. Does a patient have the right to use the genetic information that belongs to her direct-lineage family members? Extended family or relatives? Other patients with a similar condition?
5. What moral, ethical, and legal protocols can be considered in guiding clinicians in this case?
6. What moral, ethical, and legal protocols can be considered in guiding researchers in this case?

imothy B. Patrick, Peter J. Tonellato, and Mark A. Hoffman

Two health sciences graduate students, Sandy and Grace, are discussing the value of clinical uses of genetic and genomic patient information.

Sandy: It's always the same story—the supposed trade-off between the benefits to society and the sacrificed rights of the individual! Just remember the case of Henrietta Lacks. HELA cells—cancer cells taken from Henrietta before she died—have been invaluable to medical science; they led to the polio vaccine and other medical “miracles.” But Henrietta was never told what was going to be done with her cells; she never gave her permission. Nor did her close relatives and family know or give their permission. It's a clear case of science overstepping its bounds to the detriment of the individual.

Grace: Sandy, you know that scientific research's benefit to society really means the medical care benefit to the individual. Don't you remember the recent case that took place here in our own hospital—the case of Jean, a 17-year-old who was visiting the home of a friend when she fell down, struck her head, and suffered serious injuries? She was raced to the emergency room, where she required emergency surgery, and neither her parents nor her relatives could be reached before the procedure. The mother of Jean's friend provided the hospital with Jean's name and home address, which allowed the ER personnel to associate Jean with her parents in the system. Using the hospital's healthcare information system, the surgeon entered an order for the protocol that she was planning to use to treat Jean. Among the details included in the protocol was the use of halothane, a type of anesthesia. Jean had never been the subject of genetic testing, but her father had had a genetic test that found a mutation in the ryanodine receptor gene. When people with this mutation are exposed to halothane, they can experience malignant hyperthermia, an often-fatal reaction that can cause the body's core temperature to reach 106 degrees Fahrenheit.

The hospital's information system used the demographic person–person relationship between the father and his daughter and embedded pharmacogenomics decision support capabilities to infer that Jean had a 50 percent risk of also possessing this rare mutation. The system flashed an interactive alert to the surgeon, who was unaware of this genetic association. The surgeon responded to the alert by activating an alternative surgical plan that did not include the use of halothane. It was only by taking advantage of the genetic information about Jean's father that a potentially catastrophic clinical event was averted!

Sandy: But you make my case for me. The potential for abuse of genetic data is magnified by the existence and use of sophisticated healthcare information systems. There's no mystery about the potential for abuse. Jean's father was the one who had the test, not Jean. Yet the information produced by the test was also about Jean. Sure, revealing that information happened to help Jean, but the principle is that the information was about Jean as much as it was about her father. And Jean never gave her permission for that information to be used or revealed! It's her body and her genome, not her father's, right? So it's her right to privacy that was violated.

Grace: It might be her body, Sandy, but given the genetic data and information, we are bound by our Hippocratic oath to do no harm—primum nil nocere in Latin.¹ In practice and in effect, Jean's life was ours to save. What other choice did we have?

Sandy: What about consent and protecting her privacy? And what about Jean's father? Did he give permission to release the information from his genetic test to be used in ways other than for his diagnosis and treatment? How is that different from the Havasupai tribe's lost-blood case?

Grace: Remind me about that case.

Sandy: Arizona State University researchers asked the Havasupai if they would provide blood for studies to discover clues about the tribe's incredible rate of diabetes, presumably to help the Havasupai. But the researchers used the collected blood for other purposes. They used the extracted DNA for studies on mental illness. The initial diabetes studies seem to have led nowhere, but even if that effort helped save lives, it would have been lives saved without the Havasupai's consent.

Grace: Sandy, for goodness sake, it was only blood!

Sandy: Not at all, Grace, not at all.

Note

1.The following Hippocratic oath is reprinted from North (2002):

I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement: To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art. I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone. I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion. But I will preserve the purity of my life and my arts. I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art. In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves. All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal. If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.

Answer 1

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Which perspective do you agree with, Sandy’s or Grace’s? Why?

I personally agree with Sandy in this case study. Personally, it is not right to violate a person’s right to privacy or a person’s right to give consent. Also, that not only good can come from taking liberties but so can harm. However, I do feel that it is the responsibility of the doctor to use all information/resources, available to them, to care for the patients.

Do you think there are important differences between the cases of Henrietta Lacks, Jean, and the Havasupai? Explain your answer.

In these cases, consent was not given to the doctors. However, in the case of Jean it was used and intended to save her life. I feel that if the doctors were to ignore the information or did not have the information the result would have been catastrophic. I’m sure in this instance Jean’s father would have been okay with using his information to save his child but even if that were not the case, the Doctor had a duty to treat Jean. In the case of Henrietta, she was never told that her cells were going to be used for a study; therefore, her rights were taken and the ethics behind their actions were unforgivable. In the case of the Havasupai, they gave consent but ultimately what the blood was used for was not its intended consent. Like in the case of Henrietta Lacks, their rights were violated as well.

Are there cases of advances in medical knowledge that do not at least potentially, threaten to violate the privacy of individual patients?

There are thousands of clinical trials, or organizational specific trials, every year that do not threaten to violate the privacy of patients. Most times, these trials are voluntary by the patient and can result in significant amounts of information than what was previously known.

Does a patient have the right to use the genetic information on members of her direct-lineage family members? Information on members of her extended family or relatives? Information on patients with a similar condition?

It is inappropriate for someone to disclose someone else’s genetic information without consent, unless it is your bloodline children. If consent has been gathered through appropriate channels and full disclosure has been enacted, the knowledge gained should be used in a useful and appropriate way for treating others with similar conditions.

What moral, ethical, and legal protocols can be considered in guiding clinicians in this case?

• Standardizing genomic information.
• Creating an opt-in / opt-out approach to the inclusion of information in Health IT systems.
• Creating channels for attaining consent from individuals before using their genetic information.
• Enforcing a high-level curriculum which must be obtained through higher education
• Establishing an accreditation agency, specifically for the credentials of any genomic practitioner involved within the process

What moral, ethical, and legal protocols can be considered in guiding researchers in this case?

• Before using genetic information obtained from humans, make sure you have received consent.
• Perform research with full disclosure to anyone that owns the genetic information being used.
• Using historical results and data that are not individually specific
• Again, establishing a standardized approach and not a state-to-state regulation

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