Unit 16 · Ethics and the Mind

Picture a 70-year-old man named Mr. Reyes. His doctor recommends heart surgery. Mr. Reyes listens, asks questions, and then says no. He would rather spend his remaining years at home with medicine alone. His doctor disagrees but accepts his choice. This scene shows two ideas that sit at the center of medical ethics.

In 1979 two American scholars, Tom Beauchamp and James Childress, published Principles of Biomedical Ethics. They named four principles that many hospitals now use. The first is autonomy. It means a capable adult has the right to make decisions about their own body and care, even choices a doctor would not make. Respecting autonomy means giving honest information and then listening.

The second principle is beneficence. It means acting for the patient’s good: recommending helpful treatment, relieving pain, and caring for the whole person. Sometimes these two principles pull in different directions. A doctor may believe surgery is best, but the patient decides. In the past, many doctors simply decided for patients. This habit is called paternalism, and modern ethics has moved away from it.

Every medicine has risks. An antibiotic can cure a bacterial infection, but it can also cause an allergic reaction. Chemotherapy can shrink a cancer, but it can also make a person very tired and sick. Doctors weigh these risks every day. The goal is not zero risk, which is impossible. The goal is that the likely good clearly outweighs the likely harm.

This is the principle of non-maleficence, often summed up as "first, do no harm." The phrase is linked with the Hippocratic tradition of ancient Greece, though the exact words do not appear in the oath itself. Non-maleficence tells doctors not to give treatments that are useless or more harmful than helpful, and not to cause pain without a good reason.

The fourth principle is justice. It means treating people fairly and sharing both the benefits and the burdens of medicine. Justice asks hard questions. Who gets a scarce organ? Should people with less money wait longer for care? Should one group carry the risks of research while another enjoys the results? You will see these questions again in this chapter.

Before a teenager gets her wisdom teeth removed, the dentist sits down with her and a parent. He explains what the surgery does, what could go wrong, how long healing takes, and what happens if they wait. He answers questions. Then the parent signs a form. That conversation, not just the signature, is the heart of informed consent.

Informed consent has several parts. The patient must get clear information about the purpose, the likely benefits, the risks and the other choices, including doing nothing. The patient must be able to understand it, which may require an interpreter or plain language. And the choice must be voluntary, meaning free of pressure or threats. A patient may also change their mind later.

Minors usually cannot give full legal consent, so a parent or guardian gives permission. Many doctors still ask the young person for their own agreement, called assent. In an emergency, when a person cannot speak and waiting would cause serious harm, doctors may act without consent. Outside these limits, treating someone without consent is a serious ethical and legal wrong.

In 1946 and 1947, in the German city of Nuremberg, 23 defendants stood trial before American judges. Most were doctors. During World War II they had carried out experiments on prisoners in Nazi concentration camps. Prisoners were frozen, infected with diseases and harmed in other ways, without any choice. Many died. This trial is known as the Doctors’ Trial.

At the end of the trial in 1947, the judges set out ten principles for experiments on human beings. These became known as the Nuremberg Code. Its first principle says the voluntary consent of the human subject is absolutely essential. Other principles say research should aim at real good for society, avoid needless suffering, and let a person stop taking part at any time.

The code marked a turning point. It said a person in a study is a research subject with rights, not an object. It did not end all harmful research, as the next lessons show. But it gave the world a clear standard. Later rules, such as the World Medical Association’s Declaration of Helsinki in 1964, built on its ideas.

In 1932 the U.S. Public Health Service began a study in Macon County, Alabama, near the town of Tuskegee. About 600 Black men took part. Most were poor sharecroppers. About 400 had syphilis, a bacterial infection that can damage the heart, brain and other organs over many years. About 200 did not and served as a comparison group.

The men were told they were being treated for "bad blood." In truth, the study only watched what syphilis did to them over time. In the 1940s, penicillin became the standard cure for syphilis. The men were not offered it. Researchers even took steps to keep them from getting it elsewhere. Some men died of the disease, and some wives and children were infected.

In 1972 a Public Health Service worker, Peter Buxtun, gave the story to reporter Jean Heller of the Associated Press, and the study ended that year. The men and their families later won a legal settlement. In 1997 President Bill Clinton formally apologized. The study’s legacy includes new research rules and lasting mistrust of medicine among many Black Americans, a mistrust rooted in real events.

You met Henrietta Lacks in this chapter’s story. Her cells, called HeLa, became the first human cells to keep growing in a lab for a long time. Scientists called them an immortal cell line. That means a group of cells that can divide again and again, so many labs can use copies of the same cells.

HeLa cells were used to test the polio vaccine in the 1950s. Later they helped research on cancer, viruses, genes and many medicines. Yet Henrietta was never asked. In 1951, it was common for doctors to use tissue left over from treatment without asking. Her family learned about the cells only in the 1970s. They received no money, while companies sold the cells.

Rebecca Skloot’s 2010 book, The Immortal Life of Henrietta Lacks, made the story widely known. In 2013 the U.S. National Institutes of Health reached an agreement with the Lacks family. Scientists who want to use HeLa genome data must now apply, and family members help review the requests. The story raises lasting questions about consent, privacy and who benefits from a person’s body.

After the Tuskegee study became public, Congress passed the National Research Act in 1974. The law created a national commission to set clear rules for research with people. The commission met at the Belmont conference center in Maryland. Its short report, published in 1979, is called the Belmont Report.

The report names three principles. Respect for persons means treating people as able to make their own choices and protecting those who cannot, such as young children. Beneficence means maximizing possible benefits and reducing harm. Justice means sharing the burdens and benefits of research fairly, so that poor or powerless groups are not chosen just because they are easy to use.

The report turned each principle into practice: informed consent, a careful look at risks and benefits, and fair selection of subjects. Today, most U.S. research with people, including all government-funded studies, must be approved by an institutional review board, or IRB. An IRB is a committee that checks a study’s plan before it starts. When your school or a hospital runs a survey study, an IRB may review it.

In 1954 in Boston, surgeon Joseph Murray moved a kidney from one man into his identical twin brother. The brother lived for years afterward. It was the first long-term successful kidney transplant. Murray later shared the Nobel Prize. Today surgeons transplant kidneys, livers, hearts, lungs and other organs.

Most organs come from a donor who has died. Some come from living donors, who can give one kidney or part of a liver. In the United States, people can join a donor registry, often when they get a driver’s license. Buying and selling organs is illegal under the National Organ Transplant Act of 1984, because payment could pressure poor people and make access unfair.

There are not enough organs for everyone who needs one. The U.S. government reports that more than 100,000 people are on the national waiting list. A national network matches organs using medical need, blood and tissue type, time waiting and distance. Ethics asks that these rules be fair and not depend on wealth or fame. Donation is a personal choice; families can talk it over with each other and a doctor.

A bus crash sends 20 injured people to a small hospital at once. There are only a few surgeons. Staff quickly sort patients: who needs help right now, who can wait, and who has minor injuries. This sorting is called triage, from a French word meaning to sort. It began on battlefields and is now used in every emergency room.

Sometimes the shortage lasts longer. In the spring of 2020, some hospitals worried they would run out of breathing machines called ventilators for COVID-19 patients. Many states and hospitals wrote crisis plans. These plans tried to save the most lives while treating people equally, but they also stirred debate. Critics worried that some rules could treat older or disabled people unfairly.

Ethicists often say the rules for allocation, meaning how scarce resources are shared, should be made in advance, in public and with input from the communities affected. They should use medical facts, not a person’s wealth, race or social worth. People still disagree about details, such as whether to consider age or who is a health worker. These remain open, contested questions.

A woman’s mother and aunt both had breast cancer. Her doctor suggests a genetic test for changes in genes called BRCA1 and BRCA2. Certain changes in these genes raise the risk of breast and ovarian cancer. A result can help her and her doctor plan screening. It may also matter to her sisters and children, who share some of her genes.

Genetic information is unusual because it is shared by families and cannot be changed. Many people send saliva to home DNA companies to learn about their ancestry. They may not think about who else could see the data. In some famous cases, police have used public DNA databases to find crime suspects through distant relatives. People disagree about whether that use is fair.

U.S. laws offer some protection. HIPAA, a 1996 law, protects health records held by doctors and insurers. The Genetic Information Nondiscrimination Act, or GINA, passed in 2008, bans health insurers and most employers from treating people unfairly based on their genes. GINA does not cover life insurance or long-term care insurance. A genetic counselor can help people decide whether to test and what a result means.

In 1841 Dorothea Dix volunteered to teach a Sunday class at a jail in East Cambridge, Massachusetts. She found people with mental illness held with criminals in an unheated room. She spent the next two years visiting jails and poorhouses. In 1843 she presented her findings, called a memorial, to the Massachusetts legislature.

Dix belonged to a reform movement inspired partly by moral treatment. This approach, developed by reformers such as Philippe Pinel in France and the Tuke family in England, held that people with mental illness should be treated with kindness, routine, fresh air and useful work. Dix spent decades asking states to build public hospitals based on these ideas.

Many such hospitals, then called asylums, opened in the United States in the 1800s. At first, some offered real care. Over time, many became crowded and underfunded. Patients sometimes stayed for decades with little treatment. The story shows a pattern in history: a good reform can fall short when money, staff and attention run out.

By the 1950s, hundreds of thousands of Americans lived in state mental hospitals. Then several changes arrived. In the 1950s, the first effective psychiatric medicines, such as chlorpromazine, helped many people with severe symptoms. Journalists and courts exposed poor conditions. Many people argued that patients should live in their own communities.

In 1963 President John F. Kennedy signed the Community Mental Health Act. It aimed to build local mental health centers so people could get care near home. Over the next decades, most large hospitals shrank or closed. This shift is called deinstitutionalization. Many people gained freedom, jobs and family life they could not have had in a hospital.

But far fewer community centers were built than planned, and funding often fell short. Some people who left hospitals did not get steady care. Many experts link these gaps to people with mental illness who are unhoused or in jails today. Historians and policy experts still debate how much each cause matters. Building strong community care remains unfinished work.

Jordan used to love basketball. For the past month he has felt heavy and tired, sleeps badly and has stopped caring about games. Nothing big happened. His friend Ana feels something different. Before tests, her heart races, her stomach knots and worries loop in her head, even when she has studied well. Both may be describing signs of real health conditions.

Depression is more than a sad day. It is a low mood or loss of interest that lasts at least two weeks and affects sleep, energy, appetite, focus or feelings of worth. An anxiety disorder involves fear or worry that is strong, lasts a long time and gets in the way of daily life. Both involve the brain and body, and both are shaped by genes, life events and stress.

These conditions are common. The National Institute of Mental Health estimates that in 2021 about one in five U.S. adults lived with some mental illness. Most important, they are treatable. Many people feel much better with therapy, medication, or both, along with steady routines. If you notice signs like these in yourself or a friend, a trusted adult, school counselor or doctor can help.

Ana tells herself, "If I don’t get an A, I’m a failure." Her therapist asks her to write down that thought and look for evidence. Has she ever gotten a B and still done well? Yes. Together they write a more balanced thought: "A B would be disappointing, but I can learn from it." Ana practices this each week.

This method is cognitive behavioral therapy, or CBT. It was developed in the 1960s by psychiatrist Aaron Beck at the University of Pennsylvania, building on earlier work. CBT teaches that thoughts, feelings and actions affect one another. By learning to spot unhelpful thoughts and try new actions, people can change how they feel. Therapists often give short practice tasks between sessions.

Many controlled studies show that CBT helps with depression and anxiety disorders. It is often a first choice for young people. It is one kind of psychotherapy, or talk therapy. Other kinds focus on relationships, family, or skills for handling strong emotions. A good fit between the person and the therapist matters a great deal.

Jordan’s doctor listens carefully and screens him for depression. She suggests therapy first. After some weeks, they talk about adding medication too. She explains that an antidepressant may take several weeks to help, can have side effects, and should never be stopped suddenly without talking to her. Jordan and his parents decide together.

One common group of antidepressants is called SSRIs. The first widely used one in the United States, fluoxetine, was approved in 1987. Studies show these medicines help many people with moderate or severe depression and some anxiety disorders. For young people, doctors watch closely, especially in the first weeks. Only a prescriber decides on a medicine and its amount.

Daily habits also matter. Regular sleep, physical activity, time outdoors and time with people who care about you support mood and focus. Studies show exercise can ease mild to moderate depression. Habits are not a replacement for treatment when someone needs it. They work best as a steady base alongside therapy or medicine. Tell your doctor about any herbs or supplements, since some can interact with medicines.

Picture a man who first took pain pills after back surgery. Over months, he needed more to feel the same effect. When he tried to stop, he felt sick and anxious. He kept using even as it hurt his job and family. His story is common. It shows how a substance can change the brain over time.

Addiction is a condition in which a person keeps using a substance or doing an activity despite harm. The National Institute on Drug Abuse describes it as a treatable brain disorder. Many drugs flood the brain’s reward system with a chemical messenger called dopamine. Over time the brain adapts, and cravings grow. Teen brains are still developing, which is one reason early use carries more risk.

Seeing addiction as a health condition changes how we help. Effective treatment includes counseling and, for opioid addiction, medicines such as buprenorphine and methadone, which have strong evidence. Recovery is possible, and many people reach it, sometimes after more than one try. Using respectful words, like "a person with a substance use disorder," makes it easier for people to seek help.

At the Tokyo Olympics in 2021, gymnast Simone Biles withdrew from several events. She explained that she needed to protect her mental and physical health. Some people criticized her. Many more praised her for being honest. Around the same time, other well-known athletes spoke openly about anxiety and depression.

Stigma is a set of negative beliefs and labels attached to a group. For mental health, stigma can sound like "just snap out of it" or jokes about people being "crazy." It can lead people to hide what they are going through. Many people with mental health conditions wait years before seeking help, and stigma is one of the reasons.

Stigma is changing through contact and honest stories. When people hear a friend, teacher or athlete describe a hard time and their recovery, fear drops. Schools add mental health lessons. Words matter too. Person-first language, such as "a person with depression," puts the person before the condition. Some people prefer identity-first words; asking is a respectful habit.

In one classroom, Leo notices patterns in numbers that others miss and prefers a quiet corner. Priya thinks fast, has great ideas and does best when she can move. Sam reads more slowly but tells vivid stories out loud. Each of these students’ brains works a little differently. Each has real strengths and specific needs.

The word neurodiversity is usually credited to Australian sociologist Judy Singer in the late 1990s. It describes the natural variety in how human brains think, learn and sense the world. People whose brains work in less typical ways, such as autistic people or people with ADHD or dyslexia, are often called neurodivergent. The idea encourages respect rather than trying to make everyone the same.

The neurodiversity view does not deny that people may need support. Instead it focuses on accommodations, changes that help a person learn or work, such as extra time, quiet spaces, audiobooks or movement breaks. In U.S. public schools, laws such as the Individuals with Disabilities Education Act support plans that fit each student. Many neurodivergent people also value community with others who think like them.

A student sits at her desk before a test. She closes her eyes and notices her breath going in and out. When her mind jumps to worries, she gently brings it back to her breath. After two minutes, her shoulders are lower. She is practicing mindfulness: paying attention to the present moment on purpose, without judging it.

Mindfulness has deep roots in Buddhism, which began in ancient India about 2,500 years ago. The Pali word sati, often translated as mindfulness, is part of Buddhist teaching on the path to ending suffering. In Buddhism, meditation is a spiritual practice within a larger way of life and ethics.

In 1979, Jon Kabat-Zinn began a program at the University of Massachusetts Medical School called Mindfulness-Based Stress Reduction. It taught mindfulness in a nonreligious way to patients. A 2014 review in JAMA Internal Medicine found moderate evidence that meditation programs can ease anxiety and depression. They are a helpful tool for many people, not a replacement for treatment when someone needs it.

A grandmother tells her doctor that her heart feels heavy and her body aches. She does not use the word depression. In her culture, emotional pain is often described through the body. The doctor listens, asks about sleep, mood and family, and learns she has been grieving since her husband died.

Across the world, people explain and express distress differently. In some cultures, people are more likely to describe body symptoms, such as headaches or tiredness. Many Latin American communities name an ataque de nervios, a sudden episode of intense emotion, often after family stress. Traditional Chinese Medicine links emotions with the body’s organs and the flow of qi, which is the tradition’s own idea.

The American Psychiatric Association’s manual, the DSM-5, published in 2013, includes a Cultural Formulation Interview. It gives clinicians questions to ask about how a person understands their problem and what help they want. Families, faith leaders and traditional healers may matter a lot. Culturally responsive care respects these beliefs while offering treatments that have evidence.

On a night when a friend texts that they feel hopeless, it helps to know what to do. In July 2022 the United States launched 988, a three-digit number for the 988 Suicide and Crisis Lifeline. Anyone can call or text 988, or chat online, any time of day. Trained counselors listen and help people find safety and support. You can also call for a friend.

Schools have supports too. A school counselor helps with stress, friendships and plans. School psychologists and social workers can help with learning, emotions and family needs. Many schools use a safety plan, a short written list of warning signs, calming steps, people to contact and places to go. In an emergency, call 911.

Helping a friend can be simple. Listen without judging. Take what they say seriously. Stay with them, and tell a trusted adult, even if they asked you to keep it secret. You are not expected to fix everything. Your job is to connect your friend to someone who can help. Reaching out for yourself is also a strong and healthy choice.