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10/28/2016

BIOETHICS TV 10/27 – Modern miracles, body hacking, and sex trafficking

by Craig Klugman, Ph.D.

Pure Genius (Seasons 1, Episode 1)

This new TV show might be the ethicists worst nightmare. The show opens with Dr. Mulroney at a hearing where he admits to giving a patient an unapproved FDA drug to a patient who died. He is dismissed. The point of this opening scene is to present medicine as too conservative, too stodgy, and not willing to take risks for innovation.

The second presents a case takes in an Oakland, CA hospital where a 15-year-old girls is unresponsive in a “coma” for some unknown reason. A team of people wearing brown jackets shows up to transfer the patient to a new hospital, Bunker Hill. The parents have to sign a transparent touch screen and all treatment will be free. This scene is an obvious reference to the Jahi McMath case.

The premise of this show is that James Bell, a Silicon Valley billionaire, brings together innovative physicians with the most cutting edge technology that can be envisioned in a high-tech hospital. Bell’s vision is to cut out the bureaucracy—apparently federal law and regulation do not apply in this world. At the end of the episode, the viewer learns that Bell has Gerstmann-Straussler-Scheinker syndrome (GSS)—a rare neurodegenerative genetic disorder that that will begin to affect him in a few years. He built the hospital to find a cure for himself and may help a few people along the way.

Among the great leaps—a patient table with self-administered finger-stick to allow for more frequent monitoring. A full wall screen displays all of a patient’s vitals and works as a giant iPad. A former gangbanger has developed a patch and a watch that patients wear to provide constant monitoring at the hospital and can deliver medication if needed (twice this results in the monitoring center making calls to 9-1-1). No mention is made of any concerns about patient privacy, HIPAA, consent, or potential for hacking.

The two main characters are offered as a foil. Mulroney is a “cowboy” in medicine but believes that ultimately medicine is about human contact. Bell, on the other hand, thinks that the technology on its own can cure disease and improve lives.

The child from Oakland Hospital remains unresponsive after 6 months. Her physician recommends talking to the parents about withdrawing care, but Bell won’t hear of it. He is in the hope business. When Bell finds an experimental company that has tried to make brain to brain connections, he buys the company. Wearing glowing headsets, mom’s brain and the daughter’s brain are linked together. When dad asks her a question of his unconscious daughter, the girl talks through mom. Yes, the words coming out of her mother’s mouth are supposedly those of the daughter’s brain. She isn’t dead, or PVS, she’s trapped.

Another case is a classic maternal-fetal conflict story: Mom has a tumorrt growing on h but she can’t have surgery or chemo because she’s 20 weeks pregnant. As the couple is religious they will not consider an abortion. A female physician introduced as a “patient advocate” is called the “reality police” because she offers a choice between an operation (that risks the fetus) or providing comfort care. Bell says he won’t accept her “no” to saving both mother and fetus being possible. The patient is given a just developed and never used before diagnostic pill that has the ability to directly observe the fetus and tell doctors the moment the fetus can survive outside the womb. What is not mentioned is whether this is when the child is viable without technological support, high cost, and high potential for complications, or a pre-mature infant with a only chance of survival.

When the patient shows signs of mental stress, the symptoms do not fit together. Bell introduces an advanced computer system that uses big data of millions of patient files (how were these gotten without patient consent or violating HIPAA is not explained) to give a likely cause, diagnosis, and prognosis. In this case, the system believes the patient is the subject of domestic abuse. The computer turns out to be right. After waiting 24 hours, the fetus is “delivered” and survives as the second youngest birth ever. And the tumor is successfully removed. The impossible situation is solved—both are saved.

One senses that in this show, no patient will ever die and no patient will ever be incurable. As the previews for next week show, Bell actually says that when he created the hospital he made a promise that no patient will ever die. This show is clearly about providing the “medical miracle” that all patients dream of. One problem this show could create is giving patients the sense that anything and everything is possible. A second is that it will clearly ignore the ethical issues—experimenting on patients where benefit does not outweigh risk—and the legal requirements—informed consent, IRB approval, clinical trials—do not exist. The superhero view of medicine is reinforced in the last scenes where the viewer sees that the hospital staff has been reproduced as action figures standing in empowering, heroic poses. This show is all about “super doc” and the ethics are not even a sidekick.

Chicago Med (Season 2, Episode 6, October 27).

A young girl comes in with a GI obstruction. She claims to have swallowed a prototype robot that she created in her basement . The girl calls herself a “body hacker” and that her friends are “biohackers.” They are part of the DYI movement: do-it-yourself biological research. With the cost of equipment dropping and techniques becoming faster, it is possible to do medical research in the basement. Body hackers believe that technology can augment the human body. They implant LED lights into their hands, cameras into their heads, magnets, or RFID chips that can broadcast their presence to computers doing such things as turning on lights or music. The movement is controversial. For medicine, there is a question as to whether a physician should participate in implanting tech that holds no clinical function? On a social level, should there be regulations of laws about these choices? How will society respond to Homo cyborgus? Biohacking is “managing your own biology using medical, nutritional, physical or electronic techniques.” It also refers to manipulating genetics to gain traits.

Dr. Choi visits the basement and lab and is amazed at what these young kids are doing. He is hopeful that they will come up with cures for disease. The optimism is exciting but DIY body hacking also has a dark side—someone could hack a fatal virus or release a device that causes more damage than good. Pragmatically, the FDA will have to come up with a way to test these devices and drugs developed for safety and efficacy. When created by someone tinkering in a basement lab, they simply won’t have the resources to pay for traditional clinical trials.

Another storyline revisits an earlier patient who the staff learned was a sex slave, microchipped by his handlers. The patient reaches out to the psychiatric intern in this episode for help with depression. The intern feels she can help him get away from the traffickers and be safe. She confers with an expert in these matters and tries to convince him to get help, revealing that he has a tracking implant. In the next scene, the boy is wheeled into the ER. He stabbed himself trying to extract the chip to get away. A surgeon removes the chip, the intern grabs it and throws it into a stream of water. This raises several questions. Did the intern overstep her bounds in trying to extricate a patient herself from a dangerous situation? Did the patient harm himself only after the intern revealed information about the chip? Is the intent to help the patient or to make herself feel more professional and accomplished? Perhaps this storyline will return.

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