Genetic disease patients may lose privacy rights to protect families
David Rose Health Correspondent
The actress Christina Applegate had a double mastectomy last year after testing positive for the BRCA1breast cancer gene.
New guidance for Britain’s 150,000 practising doctors could remove the right to confidentiality from patients with inherited diseases.
When a patient is found to have a genetic disease, such as certain forms of cancer, doctors will be obliged to inform relatives about potential risks to their health, the General Medical Council (GMC) says.
Updated guidance on confidentiality, seen by The Times before publication on Monday, suggests that most patients will readily share information about their health with their children and close relatives.
However, in circumstances where family relationships have broken down, where children have been adopted — or patients refuse consent to disclosure — doctors should still share information with others who might be at risk if they remain ignorant of a potentially life-threatening condition.
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Genetics is predicted to become an increasingly important branch of medicine as the underlying causes of more and more diseases are linked to an individual’s family history.
When a patient is found to have a disease caused by an inherited mutation, his or her children, siblings and even parents may also be at risk.
Knowledge of someone’s condition could lead to other family members having mutations or risks diagnosed early, giving them a better chance of prevention or survival.
Despite calls from some campaigners for a change in the law, adopted children do not have a legal right to learn details of their biological relatives’ health records, even if such details are relevant to their own future health.
The GMC’s guidance says that practitioners should balance their duty to keep sensitive medical information private against the duty to help to protect others from serious harm.
“A patient might refuse to consent to the disclosure of information that would benefit others,” the guidance states. “In these circumstances, disclosure might still be justified in the public interest.”
Henrietta Campbell, the former Chief Medical Officer for Northern Ireland, who chaired the working group that drew up the guidance, said that it “makes clear that, in the first instance, doctors should explain to a patient if their family might be at risk of inheriting a condition.
“In those circumstances, most will readily share information about their health. However, if a person refuses, it is the responsibility of the doctor to protect those who may be at risk.”
Frances Flinter, a consultant in clinical genetics at Guy’s and St Thomas’ Hospital, South London, whose service covers four million patients in the South East, said that doctors could trace any affected relatives through the NHS if given a name and date of birth.
They could then get in touch with them indirectly, if necessary without revealing specific identities, by way of a relative’s local GP. This was especially important if patients were nearing the end of their lives or were not able to pass on the information themselves, she said.
“Doctors should only think of passing on information without someone’s consent, if at all, if it has direct health benefits. This is an increasingly important topic as it’s far more common to have families scattered all over the country now, and a GP is unlikely to know the extended family personally,” she said.
“We do see cases, maybe once or twice a year, where people cannot, or do not want to, share their information. In that case, we don’t need to reveal who in the family has been diagnosed. It may be a distant relative or someone the patient has never met,” she said. “Some relatives also don’t want to be screened or find out more, but at least by being contacted, patients can make that choice.”
After pressure from the Government, police and hospital emergency services, the guidance also advises doctors to inform police whenever they treat patients who have been attacked with a knife. Police are already informed about gunshot wounds.
It also provides advice for reporting concerns about patients to the Driver and Vehicle Licensing Agency (DVLA), when, due to ill health, a patient might be unfit to drive.
Statistics behind the need to know
Huntington’s disease Fatal and incurable neurodegenerative disease caused by a dominant mutation that invariably causes disease. Anyone with a parent or sibling with condition has a 50-50 chance of having inherited the gene
Cystic fibrosis Severe and incurable lung condition. Caused by a recessive mutation, so two copies must be inherited, one from each parent, for it to develop. Siblings of CF patients have high chance of beingcarriers
Haemophilia Blood-clotting disorder caused by a mutation on the X chromosome, so usually inherited by boys. Brothers of boys with X-linked conditions have a 50-50 risk of the disease
Breast cancer Some cases caused by mutations in the BRCA1 and BRCA2 genes, which each raise lifetime risk to 60-80 per cent. Women with an affected mother or sister have a 50-50 chance of having inherited the mutation. Some carriers opt for a mastectomy
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This article raises some very tricky ethical questions in terms of privacy and confidentiality. In sum, the article says that if a patient in England is found to have a genetic disease, doctors are now obliged to inform relatives about the potential risks to their health. Although most patients will willingly inform their close relatives, the new guidelines mandate that even in circumstances such as where family relationships are broken down or where children are adopted, doctors still MUST inform any relatives that could potentially be at risk. The reasoning behind this is that if an individual may be at risk for a life-threatening medical condition, early notification by doctors can lead to prevention of the disease and higher chances of survival.
ReplyDeleteFirstly, these new guidelines affect the confidentiality of patients in Britain. This brings up the ethical principle of autonomy, which is the freedom of an individual to determine a course of action for himself. In England, under the new rules, doctors should always first try to get consent to disclosure, thus following the principle of autonomy. If a patient refuses to consent, doctors can still be justified in disclosing information because as the guidelines say, doctor’s have the responsibility to protect those at risk. Basically, the new guidelines in Britain ensure that doctors will notify people that are at risk, regardless of if consent is given or not. I do not think that this means privacy rights of individuals will be eliminated. Although consent is not always needed, doctors do need to have consent to share information about WHO in particular was diagnosed with a disease in the family. This enables confidentiality to be kept while also enabling family members to find out about their potential risks.
The new responsibility that doctors in England have is based around the principle of beneficence. In this case, the principles of beneficence and autonomy conflict with one another. How do we decide which principle is more important? The point of this new policy is to inform people of their potential risks as soon as possible. Although autonomy is very important, early notification of these diseases would benefit many more people than the sick individual. Individuals also should follow the principle of beneficence, meaning they should have a duty to care for others. By withholding information about genetic diseases, people will ultimately harm others. If an individual does decide to withhold information and not give their consent, that is their autonomous decision. The new guidelines will not affect these decisions too much because they make notification possible without doctors having to exploit a particular person. A person’s identity can be protected even if doctors are obliged to inform relatives of risk. Patients in England will still have the same confidentiality that they once had. Individuals at risk will be notified at an early stage instead of only discovering their disease once it has entered the body.
-Laura Simon
This article offers examples of debate and ethical questioning. Briefly, the article states that those who are diagnosed with a genetically based disease must inform their relatives. Although most people would do this willingly, there are those situations where this is not followed through. For example, those who have been adopted are not always informed of their parents health history. This belief that doctor's mandating the informance of health is important in preventing disease and leading family members to a higher change of survival and prevention.
ReplyDeleteThe concept that individuals have the right to choose whether or not they would like to report their health reports falls under the principle of autonomy. This concept conflicts with the idea of beneficence that the doctors in England have to face because the doctor's promote the distribution of information; however, the principle of autonomy would state that it is the person's right and duty to do so.
In my opinion, the doctor's sign on to this profession knowing what is right for the patients and the community around both them and the patient. If a doctor knows that by informing the family of patients of the medical history that the family will benefit in the long run, I firmly believe that it is the Doctor's job to relay the information, regardless of the patient's wishes.
When it comes to genetic diseases, finding ethical dilemma after ethical dilemma is not a hard task. One of the most common that is discussed in today's forums is the conflicting principles of confidentiality (which links to autonomy) towards patient versus beneficence (which links to nonmaleficence) towards family members. When a doctor is informed or discovers that his/her patient has or is a carrier for a genetic disease, there is a direct dilemma between the patient's right to privacy and autonomy. Each patient has a right to informational privacy in a way that prevents harm coming to him or her whether that be in the form of abuse, stigmatization, ostracization, injustice, etc. The right to privacy is easy enough to follow (most of the time) when externatilites are not involved. When the disclosure of this information has the possibility of improving the life of another person, whether now or in the future, the right to confidentiality becomes more difficult to adhere. By not informing affected parties of possible genetic disorders, the ethical obligation of beneficence and nonmalificence may be assaulted. That is to say that a person who found out that they have a genetic predisposition to a certain disease is the recipient of beneficence and a person who's doctor can treat them in nonharmful or more useful ways by knowing genetic information is the recipient of nonmaleficence.
ReplyDeleteConfidentiality could be considered a prima fascia obligation, meaning it must be followed unless it conflicts with a stronger obligation. The sticky part of that definition, however, is determining whether the family's right to beneficence is stronger or not. To determine this, we must gather all the information. If the probability and magnitude of harm are high, such as between a married couple with one partner who is HIV positive (assuming regular unprotected sex), then it would be unethical to not share this information as the duty to benficience is much stronger than that of confidentiality. If the disease or harm is unlikely to occur and not very harmful, then the patient's right to confidentiality is stronger. At the same time, it is also important to consider the consequences of sharing this information. If knowing this information, regardless of the probability or magnitude of harm, will not be able to change the patient's fate or benefit their life, then the obligation to confidentiality takes priority. Some may consider Huntington's an example of this since there is no known cure and very little treatment for the disease even though it is 50% probable and causes much neurological harm and results in death. With making any ethical choice, it is the doctor's duty to minimize and ameliorate the negative effects of overriding the prima fascia obligation. If the doctor chooses to share genetic information with a patient's family, it is often considered a lesser harm on the right to privacy if the identity of the patient is not revealed.
With any ethical dilemma really, one must decided which obligation is stronger. In this case, the disease characteristics determine whether the right to confidentiality outweighs the duty to beneficence. The choice that is deemed the ethical solution may vary from culture to culture when considering respective weights of certain obligations.
Although I believe that it is the doctors’ duty to prevent harm, I believe by breaking patient confidentiality and telling an individual that they might be at risk for a potentially fatal disease will cause more harm in the end. Even if a patient would want the best for his or her family members, I believe this will raise unnecessary havoc and will require hundreds and thousands of dollars to actually pursue. Think about it this way, if we tested every family member that we thought had a potentially fatal disease, because of one case in their family, how would that effect the United States economy. As it is, the United States spends way more on healthcare than it should. By adding more tests and procedures, I feel like we’re asking for an economic disaster. There are a lot of individuals who would probably disagree with me right now by saying it’s better to let someone know that they could potentially die of a fatal disease. However, why worry someone into thinking they could die when they are perfectly healthy. Although chances are high that we could detect, early on, that individuals are carrying the disease, there is also a high chance we wont. This will then worry someone into frenzy, causing them to get sick even if they weren’t to begin with. In my standpoint, I’m better of not knowing. I’ll deal with it as it comes.
ReplyDelete