As genomic information become more readily available and accessible now compared to pre-Human Genome Project era, the boundaries between the ethic, legal, and social implications of genomic medicine become blurred, while providing a platform to question the confidentiality, ownership, and privacy of our own genome.
Given the backdrop of newborn screening laws in place, who has ownership over genetic testing results? Who is required to receive the information? Should third parties be included? What legal rights do you think physicians should have in situations where immediate family members should be notified of certain genetic risks? If you were to construct your own newborn screening policy, what would it entail? What are and how do we protect the patient's rights and the physician's rights?
See link of Nature Medicine Commentary Article by Reilly (2001) " Legal Issues in Genomic Medicine" Nature Medicine 7, 268 - 271.
http://www.nature.com/nm/journal/v7/n3/full/nm0301_268.html
Given the current laws in place, only patients should have sole ownership to their genetic testing results. Of course, this means they can share this information with whomever they choose. However, beyond the scope of genetic counseling from a physician, privacy of personal genetic information should be enforced. I do not think physicians have the right to disclose information about their patients' genetic information without their consent. If results are present and it is assumed that immediate family members could be at risk, the physician should speak to the patient about warning immediate family. If the patient consents, the physician may contact the family members; however, if not, the physician should try to reason further with the patient. This may or may not work. If serious harm could be avoided by warning the family, the physician should have the ability to contact the family members and recommend they undergo genetic testing. If the physician does not disclose any direct information about the patient, there is no breach of privacy. Any affected family members would benefit just as much as they would if the physician broke patient confidentiality. Though in this case of indirect warning, the doctor would not have to do so. Just an idea.
ReplyDeleteThe article addressing the legal issues that come with advances in genomics is definitely crucial for a thorough understanding of this technology. When dealing with one scientific article at a time, it is easy to forget the social implications that could come with genome testing in the general population. The section titled "Privacy and genetic discrimination" especially caught my attention. Here, the author discusses concerns involving genetic testing and its effect on insurance policies and possibly the health care system as a whole. It would be interesting to hear what this author thinks about genetic testing and its effects on other aspects of society. The movie "Gattaca", for example, introduces characters who live at a time in the future where genetic testing and gene selection are the norm. People with the genes for unfavorable traits like sicknesses, physical abnormalities, etc. suffer socially and financially, and make of the lower class. Only those with "perfect" DNA are seen as positive contributers to society. Although this scenario seems far-fetched, it is somewhat related to the topic at hand. Genomic technology is undeniably a remarkable asset to our society, but what's preventing it from ultimately becoming the decision-maker in who is valuable or not in society? This issue may not be relevant for decades, but it's scary to think about.
ReplyDeleteDespite genomics contributing to our understanding of disease and effective interventions, it has caused concern regarding how society will react to this increased knowledge. This article describes the potential social effects of genomics that can occur and how it involves not just individuals, but families, communities, and clinicians as well. Although increased access to genomic information has the future potential to limit people from living with diseases such as sickle cell disease and cystic fibrosis, it also has the potential to harm society and individuals. An example of how genetic information could do harm is mentioned above by DiPerna. This section of the article says that if genetic information was public to society, discrimination and denial to health insurance, employment, and education become possibilities. It seems like human nature for discrimination to occur if everyone’s genetic information became available to the public, which is why access to it should be limited to certain individuals. Who and how this information will be regulated and privatized is something that ultimately must be resolved by legislation or the courts.
ReplyDeleteMedical genetic services aim to help people with a genetic disadvantage and their families to live, reproduce, make sound health decisions, access relevant medical services, adapt to their unique situations and learn of new developments.
ReplyDeleteWhile the patient always has the right to know their genetic risks, sometimes patients aren’t competent enough to understand the meaning of and react to such information. Even though many individuals with genetic disorders live full, happy lives and may not experience pain or suffering, many families remain profoundly affected by genetic conditions because responsibility for the person’s care falls on them. “In the USA, of an estimated 1-2 million persons with mental retardation, only about 82,000 live in institutional settings. Most of the rest live at home.” (World Health Organization, 2003)
There is also a substantial cost to society for medical and social services, as well as lost economic output from family members who care for persons with genetic disorders (WHO, 2003). Therefore, continued efforts to develop effective treatments and make them available worldwide are just as important to the health communities as individual families. It is with this that I feel physicians should have full legal rights to inform immediate family members of certain genetic risks. Keeping close family informed allows them to prepare for the big life changes ahead.
If I were to construct my own screening policy, I would organize the conditions studied by medical geneticists into smaller, more focused groups: diseases caused by defects in single genes (i.e. cystic fibrosis), disorders caused by interactions of several genes and environmental factors (i.e. breast cancer, mental disorders), and conditions caused by chromosomal abnormalities (i.e. Down syndrome). Within these three groups, I would establish a team including, but not limited to, specialized primary care physicians and nurses, social workers, Ph.D. geneticists and therapists (psych, OT, PT, etc.).
The complications and questions that come with genetic testing are extensive and not easily answered. The issue of privacy, confidentiality, who receives the information, what to do with the information are all questions surrounding genetic testing. I believe the people receiving the genetic testing should without a doubt have ownership over their own genes. Granted they have the option to release those records to whoever they want whether it be the government, other healthcare places or to laboratories in need of testing material. People who receive this information should again be up to the person providing the genes. An individual should be the master of where this information is going. Privacy and reliability is a big deal in making this decision, if one does not what others to know their genetic information or doesn't want to be a subject of some random medical test I do not believe they should unless given some type of consent. Difficulty arises when information about ones genes can directly affect other family members. It is difficult to tell whether the doctor should have the right to inform these family members a disease or problem has occurred during this genetic testing. I still believe as an individual it is up to you to tell your family or not. This is a difficult situation but should still be up to the person getting the genetic testing. With newborn screening I believe it would be completely necessary to screen these infants for life threatening diseases. When a baby is born so many complications can arise that could be or could not be related to their genes. This process is completely necessary. I don't know of many parents who wouldn't want to know if their child has pku or a genetic complication that could be life changing. Obviously consent and confidentiality is a necessity for any human being when it comes to medical testing, this situation is no different. I believe genes are a very personal thing, whether you are a child or an elderly person. These people and newborns can't just be looked at as subjects of an experiment or lab, they need to be dealt with as sensitive, emotional beings.
ReplyDeleteAs the article points out, our generation has entered completely unforeseen advances in medical screening and technology. Starting with the mapping of the human genome to the cloning of the sheep Dolly to the possible cloning of human organs and entire humans. Genomics has developed at a remarkably fast rate. But with these new discoveries comes many moral, social, ethical, and even political questions. There are many potential effects that this increased knowledge of genomics may have on society. It is a complicated situation in understanding the legal rights and implications of genetic testing. If a patient has genetic testing done is it legal for the doctor to withhold certain information to an ill-educated patient who may make inadequate decisions with this new knowledge. Is it legal for a spouse to withhold genetic history information from their spouse? Does the patient or the doctor have more power in relation to rights? The way in which we shape our perspective involving the legal matters to genetic rights is necessary but complicated. Certain individuals should have certain rights over others in genetic information instances. I do believe that doctors have the legal obligation to inform a patient of possible genetic risks. I do believe that a spouse has the legal obligation to inform the other of possible genetic risks and testing results. When it comes to newborn screening, all newborns should undergo testing. These tests have helped diagnose and save the lives of thousands of newborns. Screening for diseases such as PKU is necessary for the well-being of the child. However, implementing a newborn screening policy would be difficult in under-priveleged and less economically successful countries. It is important to keep all members of the family well informed of possible and probable genetic risks.
ReplyDeleteGenetic testing is exciting; however, these serious privacy implications must be considered. In regards to informing third parties, I disagree that physicians must be obligated to tell third parties about their risks. First of all, how would the doctor realistically contact these people? It is not part of their job to save the world. They should focus on the patient and what the patient wants. If the patient wants to disclose the results to third parties and the third parties are willing to accept and receive the results then that should be the only case in which the third party should be informed. If the relatives really want to know their risk, they should get they're own genetic test, considering outcomes of diseases are also influenced by the environment. And in regards to the insurance companies, very strict privacy laws should be in place protecting individuals' genetic testing results. For certain diseases, such as Diabetes, the patients receiving the test should not be penalized. Detecting risk of type 2 Diabetes could actually save the insurance company money if that person modifies his or her lifestyle by exercising everyday and eating right to avoid contracting the disease as much as possible. -Alyson Rofrano
ReplyDeletePatient privacy is always a matter of ethical concern in medical situations, specifically when a patient’s medical information or test results can potentially benefit an individual’s family member or significant other. In regards to genetic testing results, I feel that although the patient has ownership of the results, however, there are certain circumstances in which a physician should have the legal right to disclose the information to any other individuals that may be affected by the test results. Confidentiality is the cause of great concern for a medical provider. Physicians, among other duties, are expected to not only keep a patient’s health status private, but also to care for all of his or her patients, as well as the population in general, to the best of their ability. They are expected to respect patients and use their power and medical knowledge to treat and prevent illness. However, in certain circumstances physicians may encounter a situation where the confidentiality of one patient may need to be infringed upon in order to provide adequate health care to another patient. Although one may claim that, a patient instills trust within the doctor and that should be respected, in cases where another patients life may be at risk, it is necessary to override this trust.
ReplyDeletePatients and their families, both nuclear and extended should be informed about any potentially genetically linked diseases. Since it is common knowledge that genetic traits tend to skip generations and show up in distant relatives, I believe it is important to notify as many relatives as possible about their risk of potentially carrying the same genetically linked disease or disorder as a distant relative. However, when it comes down to deciding who should notify the extended family, I feel that it is the responsibility of the patient to do so rather than the physician. I believe that this is not the physician’s duty, because his relationship only extends as far as him and his patients, since his patient was the one whom actively sought his services; and not the extended family. Since the extent of the doctor’s job extends between him and his patients on a uniquely distinct interpersonal level, which differs between each patient. Another reason why I don’t think it is the physician’s position to notify the extended family is because the physician is not aware of the family dynamics and how the family operates and how the members interact with each other. Say for whatever reason, the mother and father of a bride do not really approve of their future son-in-law for pressing circumstances other than genetic factors. Now, this genetic linked disease information provided to the bride’s parents could serve as additional information that would complicate this couples already difficult situation that really has nothing to do with the parents, because ultimately the couple’s relationship is only really contingent upon the bond they have with each other and is not a factor or product of their parents’ pressures. Thus if a physician went over the head of his patient, he would be breaking medical ethics relating to confidentiality. However, I believe that instating a policy binding the doctor to ensuring the welfare of all his patients, I would mandate that only under the circumstances where the doctor sees members of this couple’s extended family as his patients, can he inform them of their risk of developing late onset genetic-linked diseases.
ReplyDeleteIf I were to construct my own newborn screening policy, it would entail an assessment of a family profile, to determine which diseases/ disorders are found throughout generations, then compare these findings to general knowledge about which diseases/disorders are commonly found in persons of specific ethnic backgrounds. Then ounce this comparative assessment was conducted, the most relevant diseases would be screened for in addition to the commonly general genetic-linked genetic diseases/disorders. I believe that this policy would save money and time, and would thus be the most cost-effective strategy so that neither money nor time would be wasted.
Now that there is so much genetic information available to us and accessible to others, many social issues come into play. The following case illustrates how employers can abuse the value of genetic testing by breaching employee confidentiality. Back in 2001, a train company known as Burlington Northern Santa Fe Railroad (BNSF) requested that employees who sought disability compensation due to carpal tunnel syndrome first needed to submit blood samples for DNA testing. The employees weren’t given a reason for undergoing blood tests, but the company hoped to identify a mutation of hereditary neuropathy disorders. It seemed that BNSF was trying to deny disability benefits to employees who had this mutation. This way, it was the hereditary neuropathy association, and not an occupational injury that caused the carpal tunnel syndrome. This case directly violated the rights under the Americans with Disabilities Act because testing employees after they were disabled and without their consent was discriminatory. Furthermore, the Equal Employment Opportunity Commission often applies the Disabilities Act in order to prevent employers from utilizing genetic information in other situations, such as hiring. Therefore, this is one way in which patient’s rights are protected post-Human Genome Project times. (http://www.pbs.org/newshour/bb/health/jan-june01/genetest_06-07.html)
ReplyDeleteNow that there is so much genetic information available to us and accessible to others, many social issues come into play. The following case illustrates how employers can abuse the value of genetic testing by breaching employee confidentiality. Back in 2001, a train company known as Burlington Northern Santa Fe Railroad (BNSF) requested that employees who sought disability compensation due to carpal tunnel syndrome first needed to submit blood samples for DNA testing. The employees weren’t given a reason for undergoing blood tests, but the company hoped to identify a mutation of hereditary neuropathy disorders. It seemed that BNSF was trying to deny disability benefits to employees who had this mutation. This way, it was the hereditary neuropathy association, and not an occupational injury that caused the carpal tunnel syndrome. This case directly violated the rights under the Americans with Disabilities Act because testing employees after they were disabled and without their consent was discriminatory. Furthermore, the Equal Employment Opportunity Commission often applies the Disabilities Act in order to prevent employers from utilizing genetic information in other situations, such as hiring. Therefore, this is one way in which patient’s rights are protected post-Human Genome Project times. (http://www.pbs.org/newshour/bb/health/jan-june01/genetest_06-07.html)
ReplyDeleteNow that there is so much genetic information available to us and accessible to others, many social issues come into play. The following case illustrates how employers can abuse the value of genetic testing by breaching employee confidentiality. Back in 2001, a train company known as Burlington Northern Santa Fe Railroad (BNSF) requested that employees who sought disability compensation due to carpal tunnel syndrome first needed to submit blood samples for DNA testing. The employees weren’t given a reason for undergoing blood tests, but the company hoped to identify a mutation of hereditary neuropathy disorders. It seemed that BNSF was trying to deny disability benefits to employees who had this mutation. This way, it was the hereditary neuropathy association, and not an occupational injury that caused the carpal tunnel syndrome. This case directly violated the rights under the Americans with Disabilities Act because testing employees after they were disabled and without their consent was discriminatory. Furthermore, the Equal Employment Opportunity Commission often applies the Disabilities Act in order to prevent employers from utilizing genetic information in other situations, such as hiring. Therefore, this is one way in which patient’s rights are protected post-Human Genome Project times. (http://www.pbs.org/newshour/bb/health/jan-june01/genetest_06-07.html)
ReplyDeleteNow that there is so much genetic information available to us and accessible to others, many social issues come into play. The following case illustrates how employers can abuse the value of genetic testing by breaching employee confidentiality. Back in 2001, a train company known as Burlington Northern Santa Fe Railroad (BNSF) requested that employees who sought disability compensation due to carpal tunnel syndrome first needed to submit blood samples for DNA testing. The employees weren’t given a reason for undergoing blood tests, but the company hoped to identify a mutation of hereditary neuropathy disorders. It seemed that BNSF was trying to deny disability benefits to employees who had this mutation. This way, it was the hereditary neuropathy association, and not an occupational injury that caused the carpal tunnel syndrome. This case directly violated the rights under the Americans with Disabilities Act because testing employees after they were disabled and without their consent was discriminatory. Furthermore, the Equal Employment Opportunity Commission often applies the Disabilities Act in order to prevent employers from utilizing genetic information in other situations, such as hiring. Therefore, this is one way in which patient’s rights are protected post-Human Genome Project times. (http://www.pbs.org/newshour/bb/health/jan-june01/genetest_06-07.html)
ReplyDeleteA. Diperna is right: the idea of the "perfect" DNA and the implications that arise for discrimination is a scary thing, and is not to be fooled around with. Before the introduction of laws prohibiting the discrimination of potential employees based on genetics, it would have been easy to imagine the traditional pre-employment drug test being coupled with a genetic test. Oh, you have a gene that predisposes you to hostile behavior? And you, you have a mutation that has proven to implicate ADHD? Good thing we caught that. Especially in the U.S., where there is a particularly strong drive for success and power, if you aren't genetically predisposed to contribute toward these goals, then you have no place in the company. On the discovery of your less-than-perfect DNA profile, you would have to search for a different job in the hopes that they don't do the same.
ReplyDeleteWhile this is not a legal possibility, it will be interesting to see the ways in which genetic information is used for other-than-intended purposes. With such valuable, potentially future-predicting information at hand, it is hard not to imagine such information being used inappropriately. Especially as uses for such profiles are spread across different arenas, it has yet to be determined how we will tackle such unpredictable but threatening use of incredibly personal information.
After reading the Reilly article I find the area of legal concerns for the physicians very interesting. I agree with what many other students have said, that although we certainly have ownership of our own genome, doctors have the right to inform anyone that they believe is at risk for something they discovered by studying an individuals genome. After all doctors are in practice to help people and improve health outcomes. I think that there is a difference between telling the whole world your patient has colon cancer and telling three family members there is reason to believe they are at risk for cancer. The idea of privacy can only go so far especially as genomic research continues because at some point doctors will be withholding information that can save someone's life. Although I think that doctors are under moral obligation to disclose this life saving information, privacy is still a principle of medical ethics and therefore they should be under no legal obligation.
ReplyDeleteThe article touched on another legal issue I find very interesting and that is malpractice suits against doctors for not providing proper prenatal testing. I realize that people especially expecting mothers look to their physicians for guidance in all things medicine however, I do not think that doctors should be held legally responsible if a women doesn't have genetic testing done and then gives birth to a baby with a genetic disorder. If knowing pre-birth that an infant will have certain disorders is crucial for an expecting mother than she should be asking for testing. Everyone knows there are risks in having children and everyone has seen people in the world with disorders and diseases which is why I am particularly surprised by the term ‘wrongful births’ where people claim that they had no knowledge that their child could be born with down syndrome the doctor is at fault. I believe that suing doctors for not explaining that there is a risk your baby will not be perfect and healthy is sort of underestimating the masses.
I agree with t.burks and Alyson in that a patients and their families should be informed of genetic disorders, but that Doctors need to know their place. If a patient sees a doctor for an STI test, it is not the doctor's responsibility to track down their patient's partner(s) to inform them. I don't think genetic information should be any different. In either of these cases, the patient should be encouraged to tell others that the information might concern, but a doctor-patient relationship should not extend past the doctor and patient for many reasons that t.burks suggested. If the information is going to be passed on to third parties for research purposes, I do not think its an issue, as the article says that nobody has been harmed by negligent disclosure.
ReplyDeleteA lot of people brought up the malpractice piece of this article. It caught my attention as well because I have always thought that they are ridiculous. How far will people take these lawsuits? Along with N. Stump, I am concerned with doctors being blamed for "wrongful births." Is the birth of a child with down syndrome any more wrongful than the birth of a child that grows up to be a serial killer? Should the mother have sued the doctor for not finding the gene that might of indicated a tendency for psychopathy? I think it is too hard to know where to draw the line. If a woman decides to have a baby, she needs to take on the responsibility of knowing the risks and not leaving it all up to the doctor. The tests that are available can be so useful when they are used correctly. Lawsuits could potentially threaten more useful methods of testing if it is thought that they might just cause more trouble than help. I think that the patients that start these lawsuits are extending their rights a little bit too far. -Becca Adlman
The purpose of genomic research is to provide people with a stronger understanding of themselves and their origins, as well as to help discover new treatments and forms of prevention for genetic diseases. There is no doubt that the conducting of this research needs to be handled with the utmost care and fullest consideration of participants' rights and future applications; sensitivity and respect towards people's privacy and confidentiality are essential during the research process and also after certain tests are implemented. With the progress that geneticists have made so far, newer and more advanced techniques of primary prevention have risen such as various screening tests. These screening tests give people the opportunity to know if they potentially possess a genetic risk for a disease and then further diagnostic measures confirm if they are definitely susceptible or not. As more improvements are being made in this area, the vulnerability of people's genetic information is steadily increasing. The article discusses certain laws that are already in place to protect people from insurance or employment discrimination. I find these laws to be crucial for protection, safety, and future participation in screening tests. People will be more likely to undergo screening tests without fear of being discriminated from health insurance or a job due to a mere genetic risk. More measures should be taken to ensure that this genetic information will remain confidential and only received by the person it concerns. Physicians, who are bound by their duty to inform and also protect, must give their patients the results of screening tests whether they are favorable or not. The physicians should be obligated to tell their patients and they should also be protected because knowing this crucial information makes them liable for blame if it is not kept confidential. For newborn screening, if a child screens positive for possibly having genetic disease, the physician must tell only the patient while strictly keeping the information records confidential. And upon receipt of the information, the patient should then decide what to do as well as who else to relay the information to.
ReplyDeleteGenetic research, testing, and it's potential usage in future medicine and medical procedures is and has always been a touchy subject. The question of privacy, legal obligations, ownership of genes and their significance in a person's life have recently been put in the spot light.
ReplyDeleteIn regards to a doctor's obligation of confidentiality to their patients and their patients' disorders/genes, the issue of telling close family members about potentially life-threatening genes that is being carried by a loved one, is both legally and emotionally binding. I think it's necessary for doctors to tell those that are closest to danger the condition they're in and what preventative measures, if time allows, they should take. I do not agree with releasing this information to insurance companies or employers, for this can pose some discriminatory actions by said institutions.
Newborn screening is a crucial component to saving a child's life. Hospitals should continue to test newborns for rare and life-threatening diseases. This information should be disclosed solely to the newborn and his/her parents. I believe all states should be required by law to use tandem mass spectrometry technology to ensure a thorough examination of newborns' genes. It's a counter-intuitive not to. If newborns are found to have certain genetic disorders, early intervention can help them live and live longer, reducing costs of health care in the long run for both families and the rest of the country.
Genetic testing is definitely a step in the right direction and will hopefully help society in the future. I thought it was interesting how the article talked about all the issues relating to genetic testing. I particularly liked the parts on confidentiality, privacy, and genetic discrimination. I believe that if someone wants to get a genetic test than the results should only be known to that person. If the test results yield some type of information that should be told to the family or close relatives because it could help them, then that should be left up to the family member that got the test in the first place. It is that persons information to tell and do what they want with it. On the other hand, if we are not only looking out for the patient but also looking out for his or her family, than the person should be told before the genetic test is done that if the results yield information that could help close relatives around you, than it is a legal obligation that we disclose this information. Thus, the patient is aware that if this situation arises than the information does not just remain in his or her hands but also in the doctors. Before genetic testing takes off, these issues of information disclosure, confidentiality, privacy, genetic discrimination, and so forth should all be worked out. Then individuals can know exactly what will and can occur when they go get a genetic test.
ReplyDeleteThe article for this week focused on the effects and potential obstacles genetic testing will face if it continues to grow and become used more widely. Genetic information’s increased accessibility has created ethical, legal, and social debate. It is very difficult to address who has the ownership over genetic testing results. Obviously, the first person that should know the results is the individual him/herself. However, as the article talked about, should the results be brought to the attention of family members, given the presence of a gene, since they too are at risk of contracting a disease? This breach of patient confidentiality should be considered ethical at the physician’s level because he/she has the responsibility of improving standard of life and helping cure disease. If the physician is not able to communicate a problem effectively, then they cannot accomplish this. Therefore, I also believe that other family members at risk of having a gene present should receive the information.
ReplyDeleteSome individuals, however, will not wish to hear the results of genetic testing. Prior to releasing possibly devastating and life-threatening information to these people, the physician should ask if they want to know the results of the genetic testing. This way, a person has the right to live without knowing if they so wish. Stemming from this idea, if I was to construct a newborn screening policy, my first concern would be to find out who in the family wants to know the results. Each person deserves to be able to waive access to this information. After that, however, anyone who could potentially be at risk of having a “bad” gene and wants to know should have a right to that information. In situations like this it is impossible to please everyone all the time, so the policies must be based on what will benefit the population as a whole, rather than an individual. Thus, sharing genetic information to prevent the birth of “diseased” children or children at risk of disease is more beneficial to society. Also, society could benefit at a greater level because many people may use this information as motivation to live better lifestyles, improving the overall health of our nation.
In my opinion, unless the report contains information about condition/disease that will affect the health of the general population, the physician should honor the law by restricting the test results to the patient. However, as the article states, genomic information must be treated differently as the information could immediately affect relatives. As true as this is, I still believe that clinicians should preserve the privacy of their patient because that is who they are treating, not the patient’s whole family. It is the patient’s responsibility to inform his relatives about the condition they might have. I think third parties should not be included because I feel that the information should be between the patient and his/her doctor, and if the patient wants, the relatives of the patient. If I were to construct a newborn screening policy, it would entail acquiring the family history to get an idea of the likelihood of getting a condition/disease. I would then cross reference these odds with a computerized screening test for when the child was actually born.
ReplyDeleteIn the section of the article on Malpractice, they mention the lawsuits made against physicians who did not give their patients information about screening tests for genetic conditions like neural tube defects and Down's Syndrome. The clustering together of all genetic conditions as "wrongful births" sounds very problematic to me. These parents are arguing that they deserved the genetic testing most likely for the reason of terminating the pregnancy should the results be positive (On Thurdsay, Barbara Lerner talked about how about 90% of people looking for the prenatal screening abort in positive cases). The suggestion here is that all genetic conditions should be selected for, and that parents can select for whatever qualities are more desirable to them in a child - which raises ethical concerns over how society treats people with disabilities. The suggestion is that a baby with some form of mental retardation like Down's Syndrome has such an undesirable life that parents wouldn't want to have them altogether - personally from my experiences working with people with disabilities, including incredibly caring and positive people with Down's living very full and happy lives, I find this somewhat disturbing.
ReplyDeleteI fully understand and respect that these decisions should be made at the individual level of parents given the screens, but I question where this takes the future of prenatal genetic testing in terms of the ethical implications of child selection. To me there is a major difference in lethal genetic conditions that severely impair life vs. conditions that present challenges that can be met and managed well.
In response to a comment by C. LaPorte - the quote from the WHO is used to show how burdened families are with at home care for people with disabilities, but if people are able to live full lives outside of an institution, isn't this a much better way for them to live? What makes caring for a child a "burden" instead of the general stress and responsibility of having any child? I agree with the statement that this depends on the disability, and that parents being informed of the situation fully should be a very important focus.
In terms of disclosure of information, these decisions are very personal and have many different contributing factors involved, making it crucial that people not feel judged in making decisions but rather supported with facts and support from certified genetic counselor, knowing their conversations and actions are secure. People should be able to freely discuss concerns they have about raising a child with a disability in order to understand ways that it can be managed better, and to make whatever decisions are best for them.
The topic of this article is something that comes up in medical ethics a lot and is discussed and debated numerous times. Having taken medical ethics I better understand the implications of things such as genetic testing and its pros and cons. Like this article explains, the biggest fear that people have and I believe most important downfall of genetic testing is the fact that discrimination can occur on various levels if people were to find out someone has some sort of genetic disease. For example, one of the biggest issues is the fact that health insurance companies would try to increase coverage prices for diseased people or just not be willing to cover them at all; something that is being faught and made against the law in the United States. Also comes up the problem of discrimination when it comes to work opportunities, education, etc.
ReplyDeleteI personally believe that if someone feels the need to pursue genetic testing for their newborn they should go ahead and do it. This could help them prepare for the difficulties to come or let them know that they have nothing to worry about if it was the case that they were fearing their newborn suffered a family disease. However, I believe the test result should be completely confidential to the parents of the newborn and it is up to them to decide what to do with the results. Of course, some day they will inform their child about their diagnosis and then it is in the hands of their child to decide who he/she thinks should know the diagnosis. It also depends on how obvious the diagnosis of the disease is going to be once the child is born--say in physical aspects. Until then it is first up to the parents if they want to inform third parties about the diagnosis or not and late up to the child. For now, I believe that genetic testing in the US pretty much follows this format since it is such a touchy subject to talk about and considered very personal.
In order to broaden the scope of this blog, I want to respond to both this article and some issues raised in thursdays lecture.
ReplyDeleteAs many of you discussed, there is a huge debate over the social impact that genetic testing has on both individuals and society. I think the main problem occurring these days is that we have all the information, we are able to perform the tests and interpret the results; however, the issue arises of well what now? What do we do next? I think of particular concern to clinicians is the issue of delivering results to their individual patient, which might affect generations to come. Suddenly, the ethical issues becomes muddled with various forms of confidentiality and risk assessment.
I think one way to avoid this problem might be to expand the number of required genetic tests that are done right after birth. In thinking about the case presented on thursday, I think if the two twins had been tested earlier on when they were infants, and under the medical care of their families, the conflict between the two brothers could have been avoided. This is not to say that if parents find out that their newborn has HD, they should treat them any differently, but it might potentially change how they raise their child or handle their continuum of care. Moreover, since many genetic diseases do have treatment options, treatment could begin much sooner, possibly even avoided a symptomatic phase. Obviously there are a million different reasons why expanding neonatal testing might be problematic for when the child gets older; however, as a clinician, the duty is to treat, so if a disease is detected earlier, a treatment can be administered faster, or at least a treatment plan developed earlier.
Overall, I don't think the ethical and legal issues surrounding genetic testing will ever really be solved or put to rest, but I think there is a way to practice genetic testing in a different manner to manage and hopefully eliminate many of the issues arise when genetic testing is not done neo-natally.
I think that only the patient and the physician should be allowed to receive the genetic information. In my opinion if physicians attempt to tell third parties or the family members of the patient involved, it would be breaking the rules of confidentiality. I believe that each person should have the primary decision of disclosing their genetic information, after all they technically own it. I also think that it is not in the physician’s job to notify immediate family members about certain genetic risks. This decision should be left to the patient because giving physicians legal rights to contact family members puts too much responsibility in doctors’ hands, and could put a burden on physicians. How involved should the doctor be, and would they be liable if the family didn’t want to know about their genetic risks? I agree that the sharing of genetic information to third parties could result to genetic discrimination.
ReplyDeleteIf I were to construct my own newborn screening policy, I would use it to provide families with options and techniques they can use to prepare for a baby who has a high risk of getting a genetic disease. I think that if families knew that their baby had a disease before it will be born, they can prepare emotionally and use counseling services to learn how to take care of their baby in the best way that they can.
I think that the issues of confidentiality and who the results of genetic testing “belong to” is more black and white then what many people about seem to believe. Although a doctor might feel the compulsion to share the information and attached risks of genetic test results with other family members, doing so directly breaches the contract and oath of doctor-patient confidentiality. The decision to disclose this type of information has never been a doctor’s right.
ReplyDeleteIn medical ethics last semester we discussed a case where a middle aged male, married, with kids, contracted HIV during homosexual intercourse. His wife was unaware of his homosexuality and when the man found out he was HIV positive he knew there was no way of telling her without outing himself. Therefore, he chose to keep both facts a secret. Despite the risk to the wife, it was determined in analyzing all of the legal and ethical boundaries doctors must abide by, that the doctor was not allowed to breach patient confidentiality. I see very little difference between a situation such as this, and genetic testing. I find it surprising that it has become such a talked about issue, when the entire basis of patient trust is the comfort of knowing your doctor cannot share any of your personal information. Why would genetics change this oath and commitment doctors make to their patients?
In response to Jane.C.Tingley…
I strongly disagree that infants should be tested for diseases which may or may not develop MUCH later in life. I think strict laws need to be put in place to protect the rights of newborns. As grown adults one of those brothers did NOT want to know the results of a test such as this, and he has every right to make that decision. To try and take the decision away from people, simply by testing them as helpless, vulnerable infants is cruel. Personally I would hate to be informed by my parents that as a child I was tested and I carry the Alzheimer’s or breast cancer genes. If the test was offered to me now, as an adult, it would take a massive amount of consideration to choose to find out those results. What right do parents have to make that decision for a child who will not need to face the possibility of disease development until they have reached a point in their lives well into a time where they can make these decisions for themselves? For a case such as a newborn with HD, there are no prevention strategies available. In addition, starting any kind of therapies in childhood for a disease which might occur in midlife is not only useless but is also unreasonable. That child can choose to be tested in his/her 20s and be just as well off.
Therefore, I think the only genetic tests which should be available for infants are ones which meet the current screening requirements. I think infant genetic testing should be only for conditions for which there is a treatment plan given that the test is positive. Knowledge of the disease early on should better the child’s chance of better health or reduced risk of morbidity. We should not be testing for diseases which will occur later in life or ones which have no treatment available.
With the growing development of new genetic technologies, privacy and discrimination issues will continue to surface around the use of genetic testing. Although the Americans with Disabilities Act protects against employers discriminating against staff based upon genetic test result, genetic discrimination is still a fear for many individuals. The debate over who has ownership over the results is divisive. I think the patient and the genetic counselor should be the only people involved in discussing genetic test results. The responsibility to disclose genetic information to others should be left solely to the individual patient. For example, this week our guest lecturer on genetics explained that the genetic counselor has a duty to inform the patient of their test results and not their family. For this reason, medical providers must maintain explicit privacy standards at all times. The issue of privacy is also extremely difficult. Again, our guest lecturer provided a great example of how difficult privacy can be to maintain when she illustrated the example of the two twins. She mentioned that the genetic counselor has a right to inform their patient only and keep his medical information at the forefront while disregarding the other twin because they are not under the counselor's care. This example is similar to the article in that the privacy and confidentiality of genetic testing is only as secure as the patient makes the information. The counselor must keep confidential all results, but ultimately, it is up to the patient to share the results with family. Patients rights can be protected through federal law, as is the case with the ADA act and HIPAA. Physicians must also closely examine their individual rights as not to forget that genetic counseling involves a trusting relationship among the patient and the provider. Genetic counseling is a tricky situation that lacks clear cut answers. However, with educated counselors, physicians and stringent federal laws, individuals can learn of their genetic pre-dispositions without the fear of privacy infringements or discrimination. Keeping the patient at the center of the situation should be a priority as legal regulations continue to develop in this increasingly popular field.
ReplyDeleteTo agree with Maria above, I too have had the opportunity of taking medical ethics. Genetic screening is without a doubt a hot topic within the field there is no question that grey areas do exist within such a highly debated subject. As the article stated as well as S. Walker, the lawsuits brought up against physicians who failed to provide their patients with information about genetic screening brings up a key issue within this debate. Being informed about your options is certainly a prerequisite towards coming to a sound resolution on the issue. If more parents and families are informed about the possbilities, benefits, and downsides of genetic screening they are able to come to a proper and educated decision on whether to screen or not, and what to screen for. Of course this is not easily solved, as Shannon Doherty stated, it is important to not forget the issues of privacy, confidentiality, and discrimination that arise along with genetic screening. It is the parents right to determine whether their newborn ought to be screened and for what, yet it is important for them to understand the implications along with such screening, and the potential outcome of the screening. Additionally, do we want to see parents screening and discarding children or aborting children due to unsatisfactory results? It certainly would be challenge desigining an effective newborn screening policy that takes all of these things into account
ReplyDeleteAlthough it is important to get screened for certain diseases when an individual has high risk of that disease (based on family history, etc) the doctor has the difficult task of determining where to draw the line. Laws have been put in place requiring doctors to be sure to let their patients know of certain diseases. However, the discovery of a disease may in fact lower the quality of life for the individual who may now be worrying about the possibilities of the disease affecting children and other family members; stress is often times not a positive component of being healthy. I think that the physicians should focus on their patients, meaning that it should not be the responsibility of the physician to notify other family members. The physician should of course strongly urge his patient to tell family members to get tested but the physicians of other family members should be screening for diseases that are prevalent in the family as it is, specifically the diseases that the doctors should know about from a patient’s family history. There is no way that a physician must be responsible for people he has never met because they were not his patients. The patient seeing his physician is an adult, and should be able to decide on whether or not to tell his/her family members. Most likely if a patient has a disease he/she will end up notifying the immediate family eventually anyway and those members should decide on their own whether or not they want to get tested. As stated before, some people simply may not want to know and have to really worry and stress about a disease and how it affects their life; to them not knowing may be the better choice and we need to respect their decision. With regards to the newborn screening policy, whatever I were to decide to do about it, I would be sure that primarily all states would have the same types of diseases being tested and the appropriate equipment to do so.
ReplyDeleteI think that, ultimately, the genetic information from screenings should belong to the patient. Doctor-patient confidentiality should still apply except during circumstances in which the test results reveal life-threatening conditions that may be affecting the patient's relatives. Say that a patient wants to be tested for Huntington's. If he or she ends up being positive, the doctor should not be required to inform any children, because there is no treatment for Huntington's anyway. If, however, this patient is positive for something that CAN be treated, children should be informed so that they can also be tested and start treatment as early as possible, increasing their chance for survival. Other than immediate family members that may be at risk, I do not think that any third parties should have access to genetic information.
ReplyDeleteI think a person's DNA or genome is so intimate and so central to human identity that individuals -and not the government or insurance companies- should have total control over their genotype. However, in the interest of overall public health, I believe individuals should act charitably if disclosing some portion of their genome (perhaps some variant polymorphism) will be of benefit to the community.
ReplyDeleteWith respect to the laws regarding newborn screening, I believe parents should have full ownership of genetic test results. For me, this is a privacy issue. I don't think any other party or institution can claim a right to one's genetic information. I think it is okay if individuals want to disclose information to third parties (or authorize their doctors to do the same), as long as they fully understand the implications of sharing information as personal and private as one's DNA.
I don't think doctors should have any legal obligation in situations where it has been argued that they ought to inform immediate family members of genetic risks. Forcing a doctor to inform family members of grave genetic risk is not right, because said doctor has no responsibility to those family members. It is like legislating goodness. Also, even though genetic information may be "family-centered," I don't think the relative of an individual should have any claim to the information in the individual's genome by mere virtue of kinship.
If I were to design a newborn screening policy, I would try to make it as comprehensive as possible to allow for as many relevant tests as possible. However, testing would not be mandatory but by informed consent. Parents and doctors would have to discuss what tests are necessary, with parents having the final say. Also, the whole screening process will be governed by a set of standards, grounded in ethics and law, that protects both the rights of patients and physicians.
I do not believe that ownership over genetic testing results is something to worry about. While the human genome project was progressing, the ELSI, or Ethical, Legal, and Social issues consideration was implemented. These considerations included how genetic screening information would be accessed, who could access it, all the while ensuring that patients’ information couldn’t lead to discrimination by employers or others. With this understanding, newborn screening laws are mandated only for the health benefit of newborns, to protect them from developing serious illness if possible. For example, the first test to be mandated across the U.S. was the Guthrie test for PKU. If this condition is caught during infancy, it can be lifesaving. However, every state is different in what is required in terms of infant screening. Regardless, these screening exams are meant to improve care for infants, providing more information for physicians to start helping their (infant) patients.
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