Ethical, Legal, And Social Issues - Genome

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Ethical, Legal, and SocialIssuesDiscussion VignettesNational DNA DayApril 25, 2008

Ethical, Legal, and Social Issues Genetics is a complex field both scientificallyand socially How will society respond to the implications ofgenetic information? What sort of issues should we be consideringwhen new advances are made in the field? Who is capable of making decisions? The following vignettes are from the OnlineEducation Kit: Understanding the HumanGenome Project, produced by the NationalHuman Genome Research Institute

Vignette 1: It is 2010, and Joe Schmoe has been charged withassault. The physical evidence supporting his guilt isoverwhelming and he pleads guilty. In preparation forhis sentencing hearing, Joe's lawyer asks him to undergoa series of genetic tests to determine whether he carriesany of four genetic mutations that have been associatedin research literature with violent behavior. The tests,while controversial, show that Joe's DNA does, in fact,contain all four mutations. Based on these results, Joe'slawyer will argue that Joe should be sent to a psychiatricfacility rather than to state prison. He claims thatbecause Joe's genetic status predisposed him to thisviolent act, it would be unfair to sentence him as acriminal for behavior over which he had essentially nocontrol.

Questions for Discussion: If you were the judge at Joe's sentencing hearing, how, if at all, would theresults of this controversial genetic test influence your decision? How would your decision be influenced if Joe had only 1 of the 4 mutationsassociated with violent behavior? What would be your decision if Joe was shown to suffer from a mentalillness such as schizophrenia? How come? If Joe gets sent to prison and tries to get released on parole fifteen yearslater, should the fact that he may have a genetic predisposition to violentbehavior be used to keep him in prison, even if his behavior has beenconsistently good during his incarceration?In the future, should all newborn babies be screened to determine if theyhave genetic mutations that could be linked to violent behavior? Howcome?What if a medication became available to treat people with thesemutations?

Vignette 2: Alice Smith is a 75-year old woman with fouradult daughters. Two years ago, she was treatedfor medullary thyroid cancer, a disease known torun in families. Alice dies. Now, Lucy, Alice'seldest daughter, has been diagnosed withmedullary thyroid cancer. Lucy's physician tellsher that she likely inherited the genetic alterationand encourages her to warn her siblings and herchildren. Lucy is very angry with her mother'sphysician for not warning her. She feels that hercancer could have been detected much earlier ifshe had known she was at increased risk. Lucyconsiders filing a lawsuit against the physician.

Questions for Discussion: Did Alice's physician have a duty to warn Alice that medullarythyroid cancer runs in families and she might wish to notify herfamily of their increased risk? Did Alice's physician have a duty to warn Lucy and her sisters thatthey were at increased risk for a genetically transferable disease? If Alice's physician had warned Alice, but she asked him not tosay anything about this to her children, did the physician have aduty to keep silent or to warn the children? Would any of your answers change if you knew that an affordabletest was available to detect early signs of medullary thyroidcancer? Would any of your answers change if an effective treatment wasavailable to prevent the onset of this disease?

Vignette 3: Lisa and Tonya are college roommates. They agree onalmost everything, but react very differently to anadvertisement they saw in the local newspaper. Acompany was offering a blood test to screen formutations in the BRCA1 and BRCA2 genes. Tonya's 44–year old mom was recently diagnosed withbreast cancer. Fortunately, the disease was diagnosedearly and successfully treated by removing the smalllump from her breast. Tonya's mom is now feeling greatand has fully recovered from the surgery. Lisa, on theother hand, has had a very different experience with thedisease. When her mom was diagnosed with breastcancer at age 45, the cancer had already spread to otherparts of her body. After two agonizing years of chemoand radiation therapy, Lisa's mom died. It was a monthbefore Lisa's high school graduation.

Vignette 3: Lisa desperately wants the genetic test. At this time, shefeels convinced it will be just a matter of time before shewill get breast cancer and die from it. She also says, thatalthough she wants to have children some day, shewon't if she is found to have one of the mutations inBRCA1 or BRCA2. She says she would rather adoptchildren than risk passing it on to her children. Tonya thinks the test is unnecessary. She says it coststoo much and has heard how hard it is to get healthinsurance if you don't 'pass' a genetic test. Tonyabelieves that having a genetic test is just not worth therisks involved. She decides she will do self breast–exams regularly, since that is how her mom initiallyfound her lump. She will also start having regularmammograms sometime in her 20s. She feels that whileshe may one day get breast cancer, she will catch itearly and do as well as her mother did.

Questions for Discussion: Why do you suppose Tonya and Lisa have had very different reactions tothe availability of the genetic test for breast cancer? How important do you think knowing this information is to Tonya? To Lisa? What scientific, medical and societal information should each considerbefore deciding whether or not to take the gene test? What are the potential benefits of the test? For Tonya? For Lisa? What risks are associated with genetic testing? Do you think there are risksto family members of Tonya or Lisa? Do you think the identification of a BRCA1 or BRCA2 mutation would havean impact on how people monitor themselves for breast cancer? How wouldthe identification of a genetic mutation change your surveillance? If Tonya or Lisa decide to go ahead and have a genetic test, but nomutations are found, can they safely assume that there is NO chance thatthey will ever develop breast cancer?

Vignette 4:James Sr. was a class valedictorian for Central High School in1975 and earned an aerospace degree from Georgia Institute ofTechnology. He became an accomplished pilot for SkywayAirlines, but his dream of flying ended when his employerrestricted him from being a pilot even though he hadoutstanding scores on all his physical tests, because a bloodtest revealed the sickle cell trait.James Jr. has his father's ambition to become a pilot. He hasjust graduated from college with an aerospace engineeringdegree and was looking for a job as a pilot. His father has readrecent newspaper stories about how most employees are notprotected from genetic discrimination in the workplace. He isvery worried that his son might also have sickle cell trait and bedenied a job. James Jr. thinks his dad is overreacting and doesnot want to discuss these issues with his dad. He dismisses hisfathers concerns and is ready to interview with a number ofairlines and willing to give a blood sample if necessary.

Questions for Discussion: Are James Sr.'s concerns justified? How come? What lessons can be learned from the sickle cellscreening programs of the 1970's? Is it reasonable for any employer to collect a bloodsample from prospective employees and screenthem for genetic variations? What additional concerns are there when a genetictest is available for disease with a higher prevalencein specific populations?

Vignette 5:John Jones has been working in a nuclear power plant for 15 yearsand has applied for a medical discharge because of the emergenceof tumors in different parts of his body, all of which are attributed to agenetic condition called Von Hippel Lindau syndrome. In spite ofthese cancers, John has been an exemplary employee, havingearned numerous awards throughout his career.John learns that some workers who developed cancer were eligiblefor a substantial compensation from the employer. The companyregulations governing qualification for the compensation packageexempt diseases that are "hereditary and/or genetic" on theassumption that these diseases wereincurred prior to employment with thecompany. Without this additionalcompensation, John's medical benefitsdo not cover a majority of his medicalexpenses and he is very concernedabout how he will support his family.

Questions for Discussion: Is it fair for employers to differentiate between employees whohave a condition with a known genetic basis and those with amedical condition not identified as genetic? Should employers hire individuals with a known medicalcondition? Should they be required to cover their medicalbenefits? Is it fair for employers to use genetic information? Under whatcircumstances? As more and more diseases are discovered tohave a genetic component, what will this mean for employees andtheir medical benefits? Would your answers be different ifJohn knew he was at risk fordeveloping these cancers andsought employment in a potentiallyhazardous work environment?

Vignette 6:In 1999, scientists reported that a particularvariant of the angiotensin–converting enzyme(ACE) gene was associated with superior physicalendurance. The variant, known as the ACEinsertion polymorphism, was found to be presentin a higher proportion of elite endurance athletes,especially long distance runners, than in thegeneral population.Marathon University (MU) is offering full–tuitionscholarships and a guaranteed spot on the varsitytrack team to high school sophomores who"pass" a genetic test. If the parents sign aconsent form, University doctors will screen themfor the ACE insertion polymorphism.

Questions for Discussion:Is it likely that a single gene determines physicalendurance?Are other genes likely to be important?What other factors determine whether a child willgrow up to be an elite endurance athlete?Should parents be allowed to use geneticinformation to make decisions that will limit theirchildren's choices in adulthood?What else should MU do if it is concerned aboutthe well being of the future student-athlete?

Vignette 7Kyle is a gifted athlete who led his college football team to thenational championship and achieved his life's ambition ofplaying professional football. When he went pro, he signed along term contract worth 50 million over eight years.Throughout his first three seasons, his performance has notlived up to his coach's high expectations, and there has beentalk that the team would like to trade him.During a recent routine physical, team doctors offer the optionfor all players to take a series of genetic tests that woulddetermine whether any players had a likelihood of developingheart disease. The doctors tell the players that the tests couldinform them of potential increased risks for heart disease, butwill not actually tell them if they have the disease. ThoughKyle's team is not requiring any player to take the tests, theytell players that if a test gives a positive result, they won't beable to play football because football players are put throughstrenuous amounts of exercise that may put too much stresson their hearts. The team argues that learning such informationcould be extremely valuable and potentially life–saving to itsplayers.

Vignette 7After hearing all of the information andweighing the potential consequences, Kylechooses to take the genetic tests. Based onthe results of the tests, doctors learn thatKyle has a 25 percent chance of developing aspecific heart disease that causes the heartmuscle to thicken and work less efficiently.Because Kyle's football team does not wantto take any chances, the front office decidesto release Kyle from his 50 million contracton medical grounds, even though Kyle maynot ever develop any sort of heart disease.

Questions for Discussion: Advances in technology are making it easier and lessexpensive to screen for genetic contributions to diseases.Should employers or insurance companies be allowed torequire these types of genetic testing for diseases that mightbe related to the possible future health (or illnesses) of theiremployees, even when a person is not sick and/or has nofamily history of genetic disease? What are the positive and negative implications for employersand employees if employers (not just this football team)required these types of tests? Employers want to hire healthy people. Besides protectingemployees from harm on the job, if they fail to provide a safework environment, employers may be held legally responsiblefor any harm that comes to their employees. If work relatedactivities (exercise in Kyle's case) involve a higher risk fordisease or injury, should employers have the right to requiregenetic testing to exclude specific people from working in thatenvironment? Why or why not?

Vignette 8:Anna and Carlos' first childVincent suffers from a rareform of cancer. Doctorsexplain to Anna and Carlosthat chemotherapy couldpotentially cure Vincent's typeof cancer, but there is noguarantee this mode oftreatment would work in hisparticular case. Another optionis a bone marrow transplant,which involves killing Vincent'scells that do not work correctlyand replacing them withhealthy cells from someoneelse. If successful, the bonemarrow transplant could cureVincent of the cancer.However, for this treatment towork, the donor's tissue typewould have to be a very closematch to Vincent's, which isvery rare.

Vignette 8:Anna and Carlosdesperately wantVincent to have a bonemarrow transplant, butneither of their tissuetypes are close enoughto Vincent's to work.The doctor tells themthey could have asecond child, and, ifthis child's cells matchVincent's, the newbaby could donate cellsfrom its umbilical cordblood to complete abone marrowtransplant.

Vignette 8:Anna and Carlos decide to goahead and have a second child,whom they name Thomas. At thetime of Thomas' birth, doctorscollect the blood from hisumbilical cord for possible use inVincent's bone marrowtransplant. The parents areoverjoyed to learn that thebaby's tissue is indeed a goodmatch for Vincent's, but doctorscaution that this treatment,while more successful thanchemotherapy, still does notguarantee a cure. They cautionthat Vincent may need furthertissue donations from Thomaslater in life that require moreinvasive procedures, such asremoval of bone marrow ororgan donations, such as akidney transplant.

Questions for Discussion:zWhat do you think of Carlos and Anna's decision tohave a second child to try and help Vincent?zWould your opinion change if Carlos and Anna hadembryos genetically tested to see if they were amatch for Vincent before being implanted?zWhat would you think if Vincent needs a secondbone marrow donation when Thomas is 8, andThomas decides he doesn't want to participatebecause he is afraid of the needles involved?

Ethical, Legal, and Social Issues Discussion Vignettes National DNA Day. April 25, 2008. Ethical, Legal, and Social Issues Genetics is a complex field both scientifically and socially How will society respond to the implications of genetic information?

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