This essay looks at the impact of science and technology on various aspects of ethics in the delivery of healthcare. Technology here is used in the broader sense of the application of scientific methods as the guiding principle in the delivery of healthcare, and is not limited to the use of computers and machines in the delivery of healthcare.
For centuries, in the West, the ethics that have guided the practice of the medical arts have been those of the Hippocratic Oath. In the East, the concept is that a physician should treat patients with care like that of a parent towards his or her children (医者父母心). In short, the physician must do no harm. These ideas seem to be sufficient guidelines in the days of limited technology, but with the explosion of the pharmaceutical industry, genetic studies, computer technology and Artificial Intelligence (AI), the ethical issues that are raised by the use of these technologies can no longer be simply addressed with those wellaccepted dictums.
#AfricansAreNotLabRats
In April 2020, the directors of two big French medical institutes suggested on the French channel LCI to test the BCG tuberculosis vaccine against COVID-19 in Africa. One stated, “If I can be provocative, shouldn’t we do this study in Africa where there are no masks, no treatment, no intensive care units?” His comments caused an outrage on social networks and the hashtag #AfricansAreNotLabRats started trending. Photo: iStock
The present COVID-19 pandemic and the development of vaccines against that virus bring back to our minds the medical hero, Edward Jenner. He is considered the pioneer of vaccination. How did he do it? He observed that milkmaids who had been infected with cowpox did not develop smallpox. On the hypothesis that a person having been infected with cowpox would be protected from smallpox, he deliberately infected an eight-year-old boy, James Phipps, with cowpox and then gave him material that contained the smallpox virus. Phipps did not develop smallpox. The ethical issues were: was there consent from Phipps’ parents for the experiment, and what if the hypothesis had been wrong and there was no protection leading to Phipps dying from smallpox?
Without even considering the grossly inhumane medical experiments performed by the Nazis on concentration camps inmates, racial minorities, Jews, and mentally deficient individuals, consider these two experiments, the Tuskegee Syphilis experiment and the Willowbrook Hepatitis experiment. In the Tuskegee experiment, patients known to have syphilis were deliberately not given penicillin, a known effective treatment, in order to observe what would happen to untreated patients. In the Willowbrook Hepatitis experiment, mentally retarded children in that institute were deliberately infected with the hepatitis virus in order to observe immunity. The uproar that arose out of these experiments finally led to the Belmont Declaration and other regulations that defined the ethical rules all future clinical studies would have to follow.
With advancing technology, other issues of ethics began to arise. The main concerns of the ethical review boards, internationally referred to as Institutional Review Boards or IRBs, are the protection of the patients’/subjects’ safety. With developments in genetics and understanding of the metabolism of cells, new classes of drugs are being developed that raise issues beyond that of patients’ safety. Their rights to their own data and the confidentiality of that data are now an added concern.
The other side of the coin
Advancements in medical technology can lead to escalating costs in healthcare. 100 million people fall into extreme poverty each year because of health expenses, according to a report from the World Health Organization in 2017. National averages can mask low levels of health service coverage in disadvantaged population groups in developed countries. In 2015, the Kaiser Family Foundation found that medical bills caused 1 million Americans aged 18 to 64 to declare bankruptcy in the US. Photo: Dreamstime
Our understanding of the genetics and metabolism of cancer cells led to the development of what are known as targeted therapies. Drugs are developed targeted at the specific genetic or metabolic requirements of the cancer cell. These are expensive drugs. How many people can afford them? The former CEO of Bayer, Marijn Dekkers, once, in answer to the question of the prohibitive cost of a new medicine for lung cancer, actually said in an interview where the issue of cheaper generics being developed in India was raised, “We did not develop this medicine for Indians. We developed it for western patients who can afford it.” That raises the question: does it mean only the rich can benefit from such treatment? This also leads to the impression that pharmaceutical companies are there just to make money, and this could be one of the many reasons for the distrust of so-called Big Pharma, and the distrust of the COVID vaccine.
Who’s your daddy?
Analysis of genetic material from the remains of King Richard III of England (1452-85) found in a car park in Leicester in 2012 shows that DNA passed down on the maternal side matches that of living relatives, but genetic information passed down on the male side does not. Whilst undoubtedly useful, genetic testing can sometimes lead to uncomfortable ethical debates. Image: The King, by Alexander de Cadenet, 2016, based on an x-ray of King Richard III. Photographic print on aluminium.
With increased ease of genetic testing, there are other problems. Increasing numbers of diseases are known to be associated with certain genetic markers. For example, the mutation in the genes BRCA1 and BRCA2 is known to be strongly associated with breast cancer. Chances are some 80% of women who have the mutation will develop breast cancer sometime in their lives. The gene Factor V Leiden mutation (FVLM) is associated with the risk of developing deep vein thrombosis, or clots in the veins. Should one test relatives of patients who are known to have those genetic abnormalities? Theoretically, knowing one has an abnormal gene can assist in making decisions about treatment and prevention of the disease. It can also assist in making reproductive decisions. Let us say Mr ABC has thrombosis and is found to have FVLM. Should his children and siblings, who have never had thrombosis, be tested? Because they have never had thrombosis, if they were to test positive, it might nevertheless affect their insurance coverage. Should the doctor then tell them to buy the insurance before testing? Is that also ethical? UNESCO in 1997 stated that “no one shall be subjected to discrimination based on genetics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.” Is it therefore right for governments to prohibit the use of any genetic information by insurance companies?
There are now many commercial genetic testing companies where anyone can send his/her own sample for testing. Assuming quality control is such that the chance of any error is minimal, what if the test inadvertently shows that the parents of that person are not his/her real biological parents and he/she does not know it?
Can emotional AI make us better humans?
A recent report in The Wall Street Journal shows that Apple has been working with UCLA to see if an iPhone can detect depression and anxiety via so-called emotion recognition, using facial expressions, patterns of speech and an array of other passive behavior as a data point in determining a user's mental health. However, some scientists say emotional AI rests on faulty assumptions. Image: iStock
In 1951, a poor black American died of cervical cancer. Some of the cells from her cancer were sent for research without her knowledge. Her cells managed to survive and reproduce in culture, and that cell line is now well known as HeLa cells, from her name Henrietta Lacks. HeLa cells have helped advances in the study of cancer, and the development of many drugs. Even the development of COVID vaccines have involved using that cell line. In other words, people have made money out of her cells without her consent. More than that, her medical history is widely known. After more than half a century, people are finally raising questions about the ethics of using cell lines in this manner without the consent of the donor, and about monetary gains from using the cells from another person. The controversy has not ended, even though there are now rules governing consent on the use of specimens from patients for research, as well as the use of data from patients for research. Consent must be obtained.
The use of AI, and robotics in healthcare will raise new issues. In 2020, Google Health announced in the journal Nature that its AI could read mammograms better than experienced clinicians. In other words, its AI system’s algorithm performed better than human beings. There are a couple of problems. In order to teach an AI system to do anything useful, it has to be trained with a set of data. If the set of data presented is not representative of the population with which it is to be used, the result would not be accurate. If a wrong diagnosis is made, who is to be held accountable? Earlier, I touched on the confidentiality of patients’ data and how patients’ consents must be obtained for a particular research. Given that, it is difficult for an independent party to check the veracity of the dataset used in the development of the algorithm. So in addition to the data bias problem, there is the veracity problem. There is no legislation I know of that is addressing this issue.
Increasingly, robots are being used in hospital to dispense drugs. In Japan, many also serve the function of providing emotional support. There isPako the fluffy robotic seal, and Telenoid, a small humanoid. They provide interaction with the elderly and help relieve their loneliness. We have no idea how prolonged interactions with robots will impact the mental health of the people. Will they also develop ‘robotic behaviours’? Only time and future studies can tell.
There is no doubt technologies have brought many advantages in the area of healthcare. But there remain many ethical issues which have yet to be debated, and guidelines need to be established to deal with those issues.
The other side of the coin
Doctor Robot Dog will see you now Robot manufacturer Boston Dynamics has given its robot dog Spot Mini a new role at Boston’s Brigham and Women’s Hospital amidst the coronavirus outbreak. With an iPad mounted to the top of the robot, it becomes a mobile telemedicine platform, allowing doctors to walk into the rooms of coronavirus patients without risking infection. Does technology run the risk of de-personalising healthcare? Photo by screen capture from video by Farah Dadabhoy / Brigham and Women's Hospital
DR RONALD NG
DR RONALD NG MBBS, FRCP(E), FRCP(G), FAMS is a clinical haematologist with ICON Haematology at Mount Elizabeth Hospital, Singapore. He has held senior teaching positions at Hong Kong University, and at University College Hospital Medical School, London. He was a member of the Singapore National Medical Research Council and is currently a member of an Institutional Review Board (IRB) under the SingHealth Group of Hospitals. He is a Principal Mediator with the Singapore Mediation Centre as well as a State Court Volunteer Mediator. He has wide ranging interests in many subjects, and has completed more than 150 online courses on Coursera and edX, on topics ranging from STEM subjects to philosophy and ethics, including Machine Learning and Artificial Intelligence.
DECEMBER 2021 | ISSUE 9
Tomorrow's Technology Today
