Question

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?

CASE STUDY:

Timothy 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.

Answer 1

The argument between Sandy and Grave could neither be agreed nor disagreed when considered from each perspective. The differences exists in each three cases like in Henreitta case there was lack of adequate infirnes consent regarding that what will be taken during her procedure (as biopsy) for further tests and examinations. In Jean's case it was a problem with maintaining confidentiality and privacy of an individual broken to save another life without their knowledge. In Havasupai case there was a breach of trust for the subjects whose blood sample taken for one purpose was used for another purpose without their knowledge.In simple today these acts are considered to be illegal and subjected to punishment under law by HIPAA violations of privacy of an individual.