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01/05/2018

BioethicsTV (December 29, 2017-January 5, 2018): Medical Research and Consent for Testing

by Craig Klugman, Ph.D.

Black Mirror (Seasons 4; Episode 6): Medical research

In this British series exploring the potential nightmares of modern technology, this episode looked at three stories of research ethics in medicine. All three stories are told by the curator of a mysterious museum in the Nevada desert, who narrates his tales via objects he has in the collection. In his former life, he was a recruiter for medical experiments at a research hospital.

In the first story, the narrator reprimands an attending physician whose clinical outcomes are dropping below the mean. The physician is offered an experimental procedure that would allow him to feel what his patients feel without experiencing any of the physical damage. Thus, he could experience what a patient felt to help diagnose more quickly. The program is effective until a freak accident with the brain implant portion makes him feel intense pleasure from the pain.

The second storyline concerned a mother in a minimally conscious state. She is connected to a device that allows her brain to answer yes or no to questions. When she does not improve, the husband is offered an unapproved technique to transfer his wife’s conscious into his brain. The body would die and could be a source for organs. Uploaded into his brain, she can experience all that he does but cannot exert control on his body. All is fine until they start arguing constantly as they share a small space and cannot ever have alone time. In response, the doctors give him the ability to “switch off” her consciousness using a cell phone app. Eventually, they agree that she can be present on weekends to spend time with their child, but not on weekdays. As the father moves through his grief, he is attracted to the new neighbor and finds having his wife in his head problematic. Eventually, he wants the wife removed and is offered three options: (1) Just turn her off; (2) Have her consciousness removed; (3) have her consciousness transferred. For the husband, the first two feel like murder so he opts for the third option—having her consciousness transferred into a stuffed, toy monkey. Trapped in the doll, the mother can only say “Monkey loves you” and “Monkey needs a hug.” She cannot move; she cannot communicate; and she cannot die. We learn that laws have since been passed that require the vessel of a human consciousness to express at least 5 emotions and another law makes it illegal to destroy any object containing a human consciousness. The woman is trapped inside her prison, forever.

The third storyline concerns a man convicted of murder and sentenced to death. The narrator, now as an entrepreneur, offers to pay money to the prisoner’s wife and daughter in exchange for his participating in an experiment: At the moment of death, the man’s consciousness will be uploaded into a computer and “live out” his life as a holographic display in the museum. The display turns out to be a replica of a prison cell and visitors can press a button to simulate putting the consciousness through an execution. Thus, the consciousness suffers great harm by experiencing his own, painful death over and over again. Even worse, visitors get to keep a memento: a miniature download of the consciousness, forever locked in the moment of agonizing death. At the end, the prisoner’s now-grown daughter frees him and traps the curator in a similar hell.

For these stories to incite terror, one must accept that a download of a human consciousness is an actual person, rather than a representation of a person in 0s and 1s. In other words, the person did not die, but was just transferred to another body. These premises require a belief that (a) a person is only what is in their brain, (b) that a computer can record and capture all that is a person, and (c) that the body that dies is not the person. If one views the consciousness in the machine as a copy, then the person in the body does indeed die and a new life is created. That issue aside, the bioethics issue here is autonomy and consent. These were new experiments that had not been approved and had limited animal testing. Did the subjects truly consent or were they given impossible choices: Cease to exist or continue in an unknown state? Leave one’s family with nothing or with support? Are the choices these patients offered, real choices? In the case of the mother in the doll, she could only state Yes or No from her damaged body and thus never had the opportunity to ask questions or even to express concern. The prisoner had a limited ability to say no as a vulnerable potential subject.

Chicago Med (Season 3; Episode 5): HIV and Consent

A Ghanaian immigrant, frequent ER flyer, comes to the ER suffering from what turns out to be toxoplasmosis. Choi and Sexton recognize her symptoms as being signs of AIDS and the patient has been seen frequently in the last 6 months for several related conditions. However, the patient refuses an HIV test. Although she is not asked why, as a viewer, we can see that her resistance is because of cultural views of the disease and stigma against those afflicted. In a brief meeting between Choi, Goodwin, and Stohl, Stohl suggests turfing the patient to a public hospital since she will end up costing them a lot of money. Choi suggests forcing the patient to have an HIV test until Goodwin tells him no. However, she does say that toxoplasmosis could affect the patient’s decision-making capacity and they could order a capacity evaluation from psychiatry. Charles conducts the evaluation and determines that the patient is capacitated to make her decisions. He further states that just because the patient disagrees with the doctor does not mean the patient is incompetent. When the patient is in distress and unable to participate in her decision-making, her aunt accuses the hospital of not doing everything possible because they are poor immigrants. Choi starts saying that there are more tests than can be done—HIV tests—but Goodwin stops him. She takes him aside and explains that HIPAA prevents them from saying anything to the aunt.

Ironically, Goodwin convinces the patient to take the test by breaking patient confidentiality. When the patient is awake, Goodwin shares the files of her patients who died from AIDS in the 1980s. Sharon speaks with compassion and with grace and convinces the patient to consent to the test. However, there is the question of Goodwin’s HIPAA violation of not only sharing names, diagnoses, and photos but whole paper charts. In fact, private health information is protected until 50 years after a person’s death.

The other question is whether the aunt could have been told the patient’s condition and could have given permission for the test. In Illinois, where the show takes place, a spouse can be told of an HIV diagnosis. However, since the aunt is not a spouse and the diagnosis is suspected but not confirmed, telling would violate confidentiality. When the patient lacks consciousness, she temporarily lacks competency. Knowing her stated preferences, the physicians ethically should not have ordered the test. However, given that the patient’s only family in the country is the aunt, under Illinois law, the aunt is the surrogate decision-maker. Though the ethics are clearly against telling and testing, the aunt may have had a legal basis to have the information and consent for the test.

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