In 1983, Elizabeth Bouvia’s father drove her from Oregon to Riverside General Hospital in California, where psychiatrists admitted her as a voluntary suicidal patient. Wanting “just to be left alone and not bothered by friends or family or anyone else and to ultimately starve to death,” she had already attempted suicide once.
“Death is letting go of all burdens,” she claimed. “It is being able to be free of my physical disability and mental struggle to live.”Almost totally paralyzed from cerebral palsy, Elizabeth, then 25 years old, never had the use of her legs, although her right hand could control a battery- powered wheelchair and smoke cigarettes. She could use her facial muscles to chew, swallow, and speak. She also had painful, severe degenerative arthritis. As a California resident, her medical care was paid for by Medical, a state–federal program. She had a hard life. At age 5, her parents divorced. Afterward, her mother raised her for five years, but then abandoned her to a children’s home. The fol- lowing account comes from two physicians:For their 18th birthday, some children receive cars and gifts. When [Elizabeth] turned 18, her father, a postal inspector, told her that he would no longer be able to care for her because of her disabilities. The chief of psychiatry at Riverside says that what she did next showed great drive and promise. She gathered her requisite amount of state aid and lived on her own in an apartment with a live-in nurse. Although she earlier had dropped out of high school, she completed her general equivalency degree and went on to graduate from San Diego State University with a bachelor’s degree in 1981. She even entered a master’s program at the university’s School of Social Work, but left in 1982 over a disagreement about her field work placement.For eight months, she worked as a volunteer in the San Diego placement program, but she has never been employed for salary or wages.During the last year, Ms. Bouvia faced a series of devastating events. In August 1982, she married an ex-convict, Richard Bouvia, with whom she had been corresponding by mail. Together they conceived a child, but a few months later she suffered a miscarriage.Her husband’s part-time job did not provide enough income for the two to live decently, so they called her father to ask for help. He declined to aid them, Richard Bouvia said. They next went to Richard Bouvia’s sister in Iowa to ask for help. That did not work out for long, and soon they ended up back in Oregon, where Richard Bouvia still could not find work. At that point, he abandoned her, stating—according to pleadings in the case—that he “could not accept her dis- abilities, a miscarriage, and rejection by her parents.”A few days later, Elizabeth Bouvia got a ride to Riverside General and wheeled herself into the emergency room, complaining that she wanted to commit suicide.
During her first four months at Riverside Hospital, the chief of psychiatry, Donald Fisher, supervised her treatment. When he refused to let her starve, Elizabeth contacted the American Civil Liberties Union (ACLU) and telephoned a reporter. Richard Scott of Beverly Hills, both a physician and a lawyer, represented her free of charge.
Dr. Fisher decided that because Elizabeth might change her mind, he would not let her starve and would force-feed her: “The court cannot order me to be a murderer nor to conspire with my staff and employees to murder Elizabeth.”
Elizabeth Bouvia asked the judge to block her force-feeding.
Do you think that the doctor had to respect her request and allow her to starve herself?
Your responses to this question should be short about 100-150 words.
Part Two: THERAPY VS. ENHANCEMENT
Part Two Reference Material:
Julian Savulescu, “Genetic Interventions and the Ethics of Enhancement of Human Beings.”
Norman Daniels, “Normal Functioning and the Treatment-Enhancement Distinction.”
Sandel, “The Case Against Perfection.”
Assignment Part Two - Case:
Therapy vs. Enhancement
Scientists in New Jersey have recently inserted a gene to create a mouse with increased capacity for learning and memory—basically, a gene that increased the animal’s intelligence quotient (IQ). Normal, average human IQ is about 100. Sometimes IQ can go way up to 130s, 140s, 150s, etc. An IQ of about 70 or below is considered to indicate mental disability. Although currently highly theoretical and perhaps impossible, it might in the far future become possible to insert a human gene identified through the Human Genome Project to increase human IQ by 30 points.
Consider these two scenarios:
• A couple has a 5-year-old son with Downs syndrome with an IQ of 70. They want to use gene therapy to insert a gene to increase the IQ of their son from 70 to 100 in order for him to function normally. This is considered gene therapy, where technology is used to help a person function better.
• A second couple has a 5-year-old son with an IQ of 120. They want to use the technology to bring their son’s IQ up to 150. They feel he would then have a better chance to get accepted to a more prestigious university. This is called gene enhancement, where technology is used to help a person who is already at or above functioning levels to enhance a particular characteristic even more.
Should gene technology be used for gene therapy? Why or why not?
Should gene technology be used for gene enhancement? Why or why not?
Who should decide? Parents? Doctors? Government? Society? Someone else
Sample Solution