There is a 50% chance that Mr. F has inherited the gene for Huntington disease and, if so, a 50% chance he has passed it along to his son George. Mr. F doesn't yet show symptoms of the disease and he doesn't want to be tested. He prefers to live his life and make decisions without knowing whether or not he has the gene. George, on the other hand, wants to know if he has inherited the gene so he can plan his life accordingly.
If George gets tested and is found to carry the gene for Huntington disease, his father, Mr. F, must also carry the gene. The two men agree that, given their close relationship, it would be impossible for George to keep his test result a secret from his father.
Does George have a right to know whether or not he carries a disease gene even if it interferes with his father's wish not to know his genetic status?
Does Mr. F have a right not to know?
Would you want to know?
George has the inalienable right to opt for the genetic tests despite his father's fear. If Mr. F truly loved his son he would understand George's need to plan his future. However, Mr. F does not necessarily have to force the knowledge upon himself and attempt to stay ignorant (although why someone would make themselves purposefully ignorant is beyond me). If I were either place I would undoubtedly have the test done. orin
What's love got to do with it? I think Mr. F has rights, too. George is the one who is walking the finer line and he will probably have to build a wall between himself and his father if he opts to have the test done. Rose
Justin Carpenter writes: george has the right to know Justin Carpenter's comments: Of course George has the right to know if he has a diseased gene. It is his body, and thus has the right to do as he pleases. Mr. F. also has the right NOT to know, which is fine. But it would be difficult to keep such information from him. Since this is a fa- tal problem, I might not like to know. But if there were a chance of curing the problem, I would like to have the option of begin- ning the treatment process. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Justin Carpenter's Occupation: student Justin Carpenter's age: 11 to 20 Justin Carpenter's sex: Male
Date: Sat, 8 Apr 95 13:20:59 PDT George Cottay writes: George Cottay's comments: The question of "rights" seems inappropriate here. The testing facility either offers testing to those who request it or it does not. The decision on test/no test is best made by the young man himself, giving whatever weight he finds best to his father's objections.
Date: Sat, 8 Apr 95 13:24:07 PDT Christine Mytelka writes: Genetics Testing Christine Mytelka's comments: Americans generally agree that "one person's rights end where his neighbor's nose begins." In this case these rights are very tan- gled, but I would argue that the right to know outweighs the right to hide one's head in the sand. Mr. F's desire not to know, while understandable, betrays a certain self-absorption and no desire to prepare for those left behind to be his caretakers. George, meanwhile, betrays more thoughtfulness of others. He may want to let a prospective fiancee know what she may be getting into, or let the info help him decide whether to have children. For these decisions he could use the info now, not ten to twenty years from now when his father's condition has become apparent. Does George have the right to know? YES Does Mr. F have the right not to know? NO Would YOU want to know? YES Christine Mytelka's Occupation: Christine Mytelka's age: 21 to 30 Christine Mytelka's sex: Female
Date: Sat, 8 Apr 95 15:06:03 PDT Jason writes: George deserves the right to know Jason's comments: George should have the right to know whether or not he has the gene, regardless of whether his father does not want him to know whether he himself does also. It is George's genetic status, so he must a right to know it. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Jason's age: 11 to 20 Jason's sex: Male
Ryan J. Wyatt writes: Ryan J. Wyatt's comments: Yes, George does have a right to know whether or not he carries the gene for Huntington disease. Yes, Mr. F has a right not to know. (But his desire not to know does not, IMO, supercede George's desire to know; as a physician, I do not believe I could deny somebody a test simply because *someone else* is afraid of the results.) Yes, I believe I would want to know. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Ryan J. Wyatt's Occupation: planetarium manager Ryan J. Wyatt's age: 21 to 30
Date: Mon, 10 Apr 95 11:04:20 PDT Charles Aiken writes: Genetics Testing - Scenario #1 Charles Aiken's comments: I believe there is an inconsistency with this scenario. It is stated that George and his father have a close relationship. If that were true, George would respect his father's wish, and 1) would keep the results of knowing whether he (George) carried the gene secret from his father or 2) would not seek to know whether he carried the gene. Does George have the right to know? NO Does Mr. F have the right not to know? YES Would YOU want to know? NO Charles Aiken's Occupation: Charles Aiken's age: 31 to 40 Charles Aiken's sex: Male
The hard thing to work out is if I would want to be tested. If I was not planning to have children, and no other immediate decisions hung on it, I might not. On the other hand, I could see myself imagining all sorts of early symptoms because I would be always afraid that it was starting, so I might opt for being tested. ------------------------------------------------------------------------------ Rose Falanga rosef@exploratorium.edu Director, Library and Information Resources Exploratorium, San Francisco 415-323-0421 (VOICE) 415-528-4307 (FAX) ----------------------------------------------------------------------------
Fri Apr 28 14:31:24 1995 Hello. I've been avidly reading all these e-mail messages regarding the ethical questions of genetics. I developed my interest in genetics, particularly Marfan's syndrome, as a child. Just about every doctor I've gone to, from childhood to my most recent physical, have sent me through a battery of heart tests. Each said that I seemed (at least visually) to fit the description of someone with Marfan's syndrome. Indeed, I must agree. When I was 12 (I'm now 26) I looked up the disease, and must say I did (and presumably still do) fit the description. I'm 5 feet-9-inches tall, naturally thin (122 pounds), and gangly. My arms are incredibly long, even for my height. I wear glasses for nearsightedness. Although my eyes continue to get worse, I don't consider them a real detriment. I grew up in Indiana, and let me tell the basketball coaches loved me. Anyway, the point of my message is that throughout my life I've always had various heart tests, after suspicions of Marfan's syndrome. (I do have a functional heart murmur and was told by a cross-country coach, who happened to be a biology professor, that I have a very small heart for my size.) However, I've never been tested for Marfan's syndrome and have a few questions that maybe you can answer: If you were me, would you be concerned. (I consider myself healthy and active. I run three to five miles three or four times a week, although I tend to be plagued with various minor injuries and have always worn prescriptive orthotics.) Does passing the heart tests rule out Marfan's syndrome? Is it possible to have a "touch" of Marfan's syndrome? Also, if you don't mind me asking, how has Marfan's syndrome affected your life. Have you merely lived with the fact that you have this disease, or has it affected your life on day-to-day level? Apologies for taking up your time with this matter, and who knows, maybe these are silly questions. I've tried to pursue them with my doctors, but they seem to think that if I pass the heart tests that I shouldn't concern myself with such matters, and as they all point out, genetic testing is expensive and has never been covered under any insurance plan I 've had. Thanks in advance for any information or opinions you might have about this. Laura Moorhead
Fri Apr 28 14:37:41 1995 Elisabeth Reenstjerna writes: Elisabeth Reenstjerna's comments: This isn't up to the facility giving the tests, it is up to the family and their own ethics/values/etc. What they SHOULD or SHOULD NOT decide in this case and how they handle the results of their actions is not the business of anyone other than the fami- ly. Does George have the right to know? YES Does Mr. F have the right not to know? YES Elisabeth Reenstjerna's Occupation: Student Elisabeth Reenstjerna's age: 21 to 30 Elisabeth Reenstjerna's sex: Female
Paul K writes: Paul K's comments: This question confronts directly the American ideal of indepen- dence and individual rights: it is difficult for us to grapple with questions that involve conflicting rights of different peo- ple. George will find out soon enough if his father has the gene- the scenario allows only a few years of mystery. More importantly, George and his father can turn their rela- tionship to their advantage, and come to a compromise. They could, for example, agree that if no symptoms appear by a certain date, then they will or will not have themselves tested. Failing such a compromise, one must make a decision. This is much like trying n. In this case, each must assert his own rights only at the cost of the other's, which leaves us to decide whose right are more "im- portant." The plans one make for life are very different at twenty-one and at forty-two, especially regarding child- rearing. I believe this is the deciding factor: if George has Huntington's, he is likely to decide not to have children, both because he is unlikely to see them grow to maturity and because they are likely to be carriers or victims of the disease. This continues ad infinitum if each older generation refuses to have anyone tested. Thus, the rights of all succeeding generations outweigh the rights of Mr F. Does George have the right to know? YES Does Mr. F have the right not to know? NO Would YOU want to know? YES Paul K's Occupation: Retail mgmt Paul K's age: 21 to 30 Paul K's sex: Male
Entwife's comments: Is there a particular reason why George wants to know NOW. Is he planning to be married or have children? Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Entwife's Occupation: unknown Entwife's age: 41 to 50 Entwife's sex: Female
Fri Apr 28 14:43:14 1995 I agree with Bill Johnson. I had sent a message in somewhat the same vein as his a little while ago, but I heard that the computer was down and it got lost. I believe that Mr. F has precious little time left to not know. He should, at his age, be beginning to show some symptoms, if indeed he is going to get the disease. Am I correct? Does anyone know what the average age of coming down with Huntingtons is? So he needs to balance out his few years of not knowing with his son's many years of needing to know. I would support my son in finding out, whether or not I did not want to know. ------------------------------------------------------------------------------ Rose Falanga rosef@exploratorium.edu Director, Library and Information Resources Exploratorium, San Francisco 415-528-4421 (VOICE) 415-528-4307 (FAX) ----------------------------------------------------------------------------
Fri Apr 28 14:44:45 1995 > Mitch Monroe writes: Re: "rights" and science > > Mitch Monroe's comments: > It does seem that there's often difficulty making a distinction > between having the capability to know something and having the > right to know it, but this distinction seems crucial to this > discussion--along with the distinction between having the capa- > bility to know something and the right to reveal that informa- > tion. In this case, science/genetics obviously has the capabili- > ty to "know" whether the men in question have Huntington's; does > this mean that the scientists/technicians who perform the tests > have the "right" to reveal it to those who were tested, or to > others? There's no question about anyone having the right to > know what exactly what's on my mind at any given moment, because > society has not yet developed the capability to "know" exactly > what's on my mind...any time new advances in technology or sci- > ence are made, the distinctions made above start to appear. > > Does George have the right to know? YES > > Does Mr. F have the right not to know? YES > > Would YOU want to know? YES > > Mitch Monroe's Occupation: Teacher > > Mitch Monroe's age: 21 to 30 > > Mitch Monroe's sex: Male
> DeAnne DeWitt writes: Mr. F & George - To test or not to test - > > DeAnne DeWitt's comments: > George has a definite right to know the status of his own genetic > code. At 21 he has the inalianable right to be able to chart his > own destiny. > As I see it, there are two decisions to be made by George: 1.) To > test or not to test 2.) To tell his father or not to tell his fa- > ther. > The second decision is quite a dilemma. If George should test > postitive for the disease, then he knows his father will develop > symptoms within a few years. He then has to make a decision to > a) tell his father, or b) prepare not only for his own demise, > but his fathers, and he must manage all of those details alone. > Arrangements for medical care, food, shelter, all must be planned > in advance. > Many comments deal with the rights of the father, but does he > have the right to demand that his son suffer ignorance? I belive > the father is being irresponsible in refusing knowledge. > > Does George have the right to know? YES > > Does Mr. F have the right not to know? NO > > Would YOU want to know? YES > > DeAnne DeWitt's Occupation: Technical writer > > DeAnne DeWitt's age: 21 to 30 > > DeAnne DeWitt's sex: Female
Dave Mayer writes: Dave Mayer's comments: The fundamental issue here is one of conflicting rights. I am personally a "pure freedom and rights" skeptic. I believe that all rights in some way and to some extent produce a negative ef- fect upon others, be it other human beings, or other living or non-living things (although these effects are often "commonly" accepted or neglected). I personally tend to err on the side of rights given, unless the rights given (or not given) have a de- trimental effect on the environment and non-human life. To me, this particular case (Mr. F and son) is rather trivial, since the maximum detriment is only the mental frustration of one man (if Mr F's right to not know becomes violated). Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Dave Mayer's Occupation: Software Engineer Dave Mayer's age: 31 to 40 Dave Mayer's sex: Male
K.M. Coady writes: Rights vs. right K.M. Coady's comments: The basic answer to the posed scenario is that, legally George has the right to find out his health status. The mere existence of the facility bears this out. The dilemna faced stems less from his "inalienable" right to have information but from the moral quandary of who is being hurt through disclosure or non- disclosure. They are both there because the true issue is the impact that the information available will have on their personal relationship. Would George having the information be able to respect his father's desire (and let's be clear on the distinc- tion between "desire" and "right")? That is the true question. My mother, with far less education than any of her children, would listen to us expend energy thinking of the correct argument to justify an action we had already chosen and then say "If you have to think about it that much, it must be wrong." The truth of this is difficult to dispute. We are our own barometers and must live and die with the decisions we make. Every day that I spend re-building my case for justification of an action already taken is proof that my original argument did not hold, even with me. I would say that the test should be postponed until each was sure he could live with the consequences. Does George have the right to know? YES Does Mr. F have the right not to know? NO Would YOU want to know? NO K.M. Coady's Occupation: Public School teacher K.M. Coady's sex: Male
Samantha A. Saxman writes: Response to Question No. 1 Samantha A. Saxman's comments: I think that the father is being irresponsible to himself and to his son. The father should get tested so that if he is about to develop Huntington's he can prepare for it. If he gets sick who will care for him? His son? Does George have the right to know? YES Does Mr. F have the right not to know? NO Would YOU want to know? NO Samantha A. Saxman's Occupation: model Samantha A. Saxman's age: 21 to 30 Samantha A. Saxman's sex: Female
Padraig Hart, Ph.D. writes: Genetics Testing No.1 (HD) Padraig Hart, Ph.D.'s comments: The problem as I see it centres around the son's inability to keep the test results from his father. If the father wishes to live his life in blissfull ignorance then that is his perogative (of course it may be the son who has to look after him later on). However, the son has a right to know the information carried by his genes, and whether or not he will develop the disease. Suit- ably counselled, there should be no reason that he should not be able to be tested. One problem, however, is that testing the son may alert him to the genetic status of his father, something he does not really have the right to know. Of course the son could always wait 5-10 years to see if the father develops symptoms (he himself would probably still be unaffected at this time), but this is hardly a satisfactory solution. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Padraig Hart, Ph.D.'s Occupation: Research Scientist Padraig Hart, Ph.D.'s age: 21 to 30 Padraig Hart, Ph.D.'s sex: Male
Merry Selk's comments: I chose genetic testing to evaluate my pregnancies, recognizing the difficulty of raising a child with serious disabilities. Although "George" has the right to know his genetic status, he also has a responsibility to maintain total secrecy from his fa- ther, to protect his Dad's equally legitimate interests. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Merry Selk's Occupation: medical writer Merry Selk's age: 41 to 50 Merry Selk's sex: Female
Vince Hamner's comments: Seems like most contributors agree that a). George has a right to know and that b). they themselves would want to know. However, there seems to be some debate as to whether or not Mr. F has a right NOT to know. Interesting! Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Vince Hamner's Occupation: Research Scientist Vince Hamner's age: 21 to 30 Vince Hamner's sex: Male
chris.h. writes: ignorance is bliss? chris.h.'s comments: BEFORE GEORGE DECIDES TO BE TESTED HE SHOULD SEEK THE ADVICE OF A GENETIC COUNSELLOR.THIS WILL HELP GEOERGE DECIDE IF HE REALLY WANTS TO KNOW,AND IF HE DOES TO HELP HIM TO COPE THE WORST POSSI- BLE OUTCOME SHOULD THAT BE THE CASE.ALSO NO ONE REALLY KNOWS WHAT AGE THE DISEASE WILL MANIFEST ITSELF AT SHOULD GEORGE BE AFFLICT- ED, AND HR MAY LIVE A PERFECTLY NORMAL LIFE WHATEVER HE CHOOSES TO DO. WHATEVER DESCISION GEORGE MAKES IT SHOULD BE WELL THOUGHT OUT AND TAKEN AFTER HE HAS GOT ALL OF THE FACTS AND NOT IN RASH HASTE WITHOUT THOUGHT FOR THE CONSEQUENCES. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES chris.h.'s Occupation: GENETICS STUDENT chris.h.'s age: 21 to 30 chris.h.'s sex: Male
Jim writes: Jim's comments: What does right mean? George has a legal right to be tested. Is it ethical? It would be if in so doing George does not harm someone else, namely Mr. F. The relationship may suffer if George gets tested and then has to keep information from his fa- ther. Does George have the right to know? YES Does Mr. F have the right not to know? YES Jim's Occupation: Jim's age: 41 to 50 Jim's sex: Male
Larry K. writes: Larry K.'s comments: George has the right to know, even though his actions (based on knowing the test result) will let his father know if he has or doesn't have the disease. Does George have the right to know? YES Does Mr. F have the right not to know? YES Larry K.'s Occupation: Larry K.'s age: 41 to 50 Larry K.'s sex: Male
Gene Pool Visitor writes: Gene Pool Visitor's comments: Yes, George has the right to know. It's his body and his future. Does George have the right to know? YES
simon vink writes: simon vink's comments: I don't want to know if I'm gonna be run over by a truck next week, so wy shuold I want to know if I might get a serious desease the next decade. Anyhow sincethere are technics to dis- cover somedeseases I guess evey individual has aright to use these tests. Doctors and testers must explain that a positive or negative indication has only statistic effects and do not give certainties. The major problem is not if the father does or does not want to know, but what insurance companies are going to do with the results and the knowledge.I'm sorry, I just found out how to enter a next line. Hope you can0an edit this comment.0'm a science-journalist from Wageningen, Holland (Europe) Does Mr. F have the right not to know? YES Would YOU want to know? NO simon vink's Occupation: science journalist simon vink's age: 41 to 50 simon vink's sex: Male
writes: Re: Genetics scenario #1 Facts: 1) George has a right to know if he has the disease. 2) Mr. F. has a right to know if he (by implication) has the disease, and can exercise this right by choosing not to know. 3) Mr. F. does not have the right to prevent 1) above. 4) George does not have the right to prevent 2) above, by telling his fa- ther the results of the test. The logical solution seems to me to be that Mr F's choice not to know includes his enquiries of his son's results. George should respect that right by not deli- berately forwarding the information. Therefore George should be allowed to take the test, whether this divides the two men or not. Unfortunately, life does present circumstances where, no matter what the outcome, things will be bad. Here we have to look at whether George considers it more important to conserve his good relationship with his father, or conserve his own good state of mind and confidence that his own future will be problem-free. Would that we all could know our fate. Also, a brief journey into statistics shows: Mr F. has a 50% chance of having the disease. George has (50% of 50%) 25% chance. If George has the disease, then Mr F. has to have it. But the most likely outcome, that George does not have the disease, also gives his father an even chance that he does not have the disease. His father can exercise his own right to delude himself (an extrapo- lation of the right to not know) and convince himself that the test results would have been favour- able for both men. Paul. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES
writes: Re: Genetics scenario #1 Facts: 1) George has a right to know if he has the disease. 2) Mr. F. has a right to know if he (by implication) has the disease, and can exercise this right by choosing not to know. 3) Mr. F. does not have the right to prevent 1) above. 4) George does not have the right to prevent 2) above, by telling his fa- ther the results of the test. The logical solution seems to me to be that Mr F's choice not to know includes his enquiries of his son's results. George should respect that right by not deli- berately forwarding the information. Therefore George should be allowed to take the test, whether this divides the two men or not. Unfortunately, life does present circumstances where, no matter what the outcome, things will be bad. Here we have to look at whether George considers it more important to conserve his good relationship with his father, or conserve his own good state of mind and confidence that his own future will be problem-free. Would that we all could know our fate. Also, a brief journey into statistics shows: Mr F. has a 50% chance of having the disease. George has (50% of 50%) 25% chance. If George has the disease, then Mr F. has to have it. But the most likely outcome, that George does not have the disease, also gives his father an even chance that he does not have the disease. His father can exercise his own right to delude himself (an extrapo- lation of the right to not know) and convince himself that the test results would have been favour- able for both men. Paul. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES
David S. writes: Huntington's Disease Father and Son David S.'s comments: I believe that George does have the right to know, as it is his right to know what's transpiring inside his body. His father certainly has the right of ignorance and can continue such a right even with his son's newfound knowledge. Perhaps then the only issue really is can George keep such information away from his father, each respecting the other's preferences. This seems far less problematic than not knowing (or knowing) one's own fate. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES David S.'s Occupation: Media Producer David S.'s age: 21 to 30 David S.'s sex: Male
Would YOU want to know? YES Does Mr. F have the right not to know? YES Does George have the right to know? YES Since my life has been influenced by a genetic problem - my seven year old has Cystic Fibrosis - I have certain beliefs0bout know- ing and not knowing - knowing gives you certain 0hoices - although, some people do not believe they should 0ave that many choices - knowing enables you to do certain 0hings that might minimize the impact of the disease or0ondition on loved ones. Although it is hurtful to know some-0imes, it is a very difficult life for those affected with0he genetic problems and those who care for them. However,0here are things that can be done with the time left in 0he person's life that you might not think about otherwise.0o many of us assume without a known problem that we can0ake for granted many things. Knowing the problem makes the0ood times precious and hopefully these can be condensed for0njoyment and quality of life. I think it is better to know 0f the condition, for all parties, so as to remove the 0nxiety of not knowing and always wondering, and to get on0ith the living of life in possibly a better way. If people 0ind out, they can go through the grieving process and get0ver it. If they do not ever know, there is incredible 0nxiety with always wondering.
Adam Jenkins writes: Senario #1 Adam Jenkins's comments: Rights are nothing more than social constructs, but, in our so- ciety, George does have a right to know, certis parabis. However, it is a generally held belief that we need to try not to infringe the rights of others in our actions, and therefore, close or not, George should not tell his father. Of course, he will - nut such merely shows how difficult it is for us to live up to our ideals. George's father has an equal right not to know, for he is enti- tled to be ignorant, but the moral responsibility must rest on George, not the doctor. It is not my responsibility to force others to do as I would expect them, and it is not the doctor's responsibility to refrain from telling someone information about their health simply because it might mean that another person discover's something about his own health in doing so. There is no true ethical dilemma here at all, at least where the doctor need be concerned. And I would rather not know. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? NO Adam Jenkins's Occupation: PHd student studying ethics. Adam Jenkins's age: 21 to 30 Adam Jenkins's sex: Male
Salim Massoud writes: Scenario #1 Genetics Testing Salim Massoud's comments: First of all, George has a right to know whether he carries the disease gene. At the same time Mr. F also has a legitimate right to not know whether he carries the gene. So, assuming that there is no way for George to keep the information from his father, the question is really a matter of priority, or whose rights are more important, as it seems that there is really no room for comprom- ise in this situation, either you know or you don't. Yet I don't think there is really a simple answer to this question, which is correct in every case. It is something that has to be worked out between George and Mr. F. George has to understand how and to what degree it would affect Mr. F, if he knew his status for sure and guage whether that is more important than satiating his cu- riosity. Mr. F is equally responsible for understanding the im- portance of this knowledge to his son's future and determining whether that is more important than his desire to be unaffected by such knowledge. In short, the only reasonable solution I can suggest here, is communication and respect for other's viewpoints. After which it is up to the interested parties to come up with an agreement which they can live with. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Salim Massoud's Occupation: student Salim Massoud's age: 11 to 20 Salim Massoud's sex: Male
Flutterby writes: Flutterby's comments: I can understand Mr. F's desire to live in ignorance. There are'nt very many people, when you get right down to it, who can emotionally and/or mentally deal with a future that ends in such a horrible way. Better to live here and now where the sky 'is' blue and the world holds bright promise of tommorows to come. However, George has a need to know, and a right to that knowledge. George is better equipted, I think, to deal with the certain know- ledge of a future dark and grim. So now we come to the problem between father and son. There is just no way for George to keep the results from his father. His actions and de- cisions will speak out even if he himself does not. A good rela- tionship built on a strong foundation can weather just about any- thing. I think George should be prepared for the possible reac- tions of his father to the test results, perhaps checking into support groups, counsellors, asking his for advice. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Flutterby's Occupation: Newspaper carrier Flutterby's age: 31 to 40 Flutterby's sex: Female
Ronald Matky writes: My opinion about genetic Testing and the problem of Mr. F. and his son Ronald Matky's comments: Life means to get information about everything that concerns you. Deseases concern me very much. So nobody has the the right to hinder me in getting information about my body (genes are a part of it). If Mr. F. doesn't want to learn, he must close his eyes, ears and so on. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Ronald Matky's Occupation: CTA Chemotechnician Ronald Matky's age: 51 to 60 Ronald Matky's sex: Male
James D. Boyd writes: re: scenario #1 James D. Boyd's comments: I must preface my comments by saying that I do not know thesymp- toms of Huntington disease. I do not believe,however,that0y answer would change if death was the inevitable end or if 0t was the cause of a debilitating condition.0hat, I ask, is a right not to know? If I am told that there 0s a leech on my shoulder, can I exercise my right not to 0cknowledge that claim? Or if I see the body of a loved one in 0 casket at a funeral, can I exercise my right not to know that 0hey are dead?0t seems to me that there is a choice that people make 0ith any piece of information they acquire; a choice that 0ssigns relative importance to that piece of information. 0eorge has assigned a relatively high importance on knowing if0e has the genome for Huntington disease. Mr. F has avoided the0alue assignation by avoiding the information. Wit- holding 0nformation has ethical ramification based on the value others0ave placed on the `fact' you can share. If it is of little0mportance, witholding it is considered a "white lie," but a sin0f ommission nonetheless. If it is a piece of information that0s of critical importance to someone, such as logistical data 0egarding the placement of terrorist weapons, then the crime is 0uch more serious. 0oth of these illustrations suggest that indeed there is0 right to know. But using a Kantian framework of respect, viz.0especting the individual's right to assign their own value to0iven pieces of information, there can be no right not to know.0his may cause conflict between George and Mr. F, but 0ecause they are rational entities, they can deal with it. Does George have the right to know? YES Does Mr. F have the right not to know? NO Would YOU want to know? YES James D. Boyd's Occupation: student of Physics, Communication & Philosophy James D. Boyd's age: 21 to 30 James D. Boyd's sex: Male
Dan Shafer writes: Scenario #1 Dan Shafer's comments: I see this as less an ethics issue than a relationship problem. Of course George has a right to know if he has a fatal gene. Equally obviously, his father has a right not to know. If it weren't for the somewhat gratuitously added condition that they have agreed their relationship is so close that it would be im- possible for George to keep the information to himself, there would be no problem here. The solution lies not in making an ethical decision about George and Frank and their rights but in getting them to understand how to relate to one another on this subject. Does Frank care if his son is dying? If not, then they can agree not to discuss it open- ly. If so, there's no problem. Does George have the right to know? YES Does Mr. F have the right not to know? YES Would YOU want to know? YES Dan Shafer's Occupation: writer Dan Shafer's age: 41 to 50 Dan Shafer's sex: Male