Confidentiality Vs Conundrum Essay
GenEthics:
The
Confidentiality vs. Duty to Warn Conundrum
GenEthics:
The
Confidentiality vs. Duty to Warn Conundrum
This report will examine the ethical conundrum of patient confidentiality vs. a doctor’s duty to warn a patient of a potential health risk (see Appendix one for scenario). Primarily, this report will argue that patient confidentiality cannot be overruled, as there is not adequate legal or ethical reasoning to do so and as such, Jane’s doctor should not inform her children of their potential mutated gene.
A gene can be defined as ‘A sequence of DNA that carries the information required to make a molecule, usually a protein’ (Yourgenome.org: 2010). Deoxyribonucleic acid, …show more content…
or DNA, is made up of genes and is contained in the nucleus of cells in the human body and its purpose, simply put, is to instruct the body on how and when various proteins should be constructed (Geneticshomereference.gov: 2011). These instructions are constructed, and subsequently differ from organism to organism, by the pairing and subsequent alignment of four bases; adenine thymine, guanine and cytosine. This alignment is known as a double helix (See Appendix 2 for image).
Proteins, which are made up of amino acids, are an essential part of all living organisms and are necessary for growth and muscle development (Google Dictionary: 2010).
In humans, when a male sperm cell and a female egg cell combine to produce a zygote, specific genes from the two parents are combined. The genes that are selected for this new child are based on their dominant or recessive qualities.
Genetic mutation is defined by Wordnetweb.princeton (2010) as being ‘Any alteration in the inherited nucleic acid sequence of the genotype of an organism’. This mutation can occur for a variety of reasons; exposure to radiation, environmental factors (including ultra-violet light) or genetic construction …show more content…
errors.
Male sperm cells contain either an XY or XX pattern on their chromosome; an XY pattern eventuates in the creation of a male, while an XX pattern eventuates in a female. Females only receive X chromosomes and as such, they always contribute X chromosomes to a child, whereas a male can contribute either an X or a Y chromosome to the child, as he received both. In this scenario, Jane received a mutated BRCA1 gene from her father, as well as a normal BRCA1 gene from her mother. Subsequently, Jane had two children; a boy and a girl, with a husband who is not a carrier of the mutation. Jane’s children’s pattern of genealogical inheritance in relation to the BRCA1 gene is demonstrated in the table below:
(Blue squares represent egg cells contributed by Jane, while red squares represent sperm cells contributed by Jane’s husband.) | N (representing a normal BRCA1 gene) | N (representing a normal BRCA1 gene) | M (representing a mutated BRCA1 gene) | MNThis would result in a child carrying the mutation. | NMThis would result in a child carrying the mutation. | N(representing a normal BRCA1 gene) | NNThis would result in a normal BRCA1 gene being inherited. | NNThis would result in a normal BRCA1 gene being inherited. |
The above table illustrates that there is only a 50% chance of either child inheriting a mutated BRCA1 gene. This means that there is no guarantee that Jane’s children will have contracted the gene. However, the BRCA1 gene is a gene which, after mutation, is linked with increased likelihood of contracting breast cancer. The BRCA1 gene belongs to a class of genes known as tumour suppressors. Hence, when the gene is mutated, and can no longer do the job it was intended for and the patient becomes far more prone to contracting cancer. According to Cancer.gov, a patient who has a mutated BRCA1 gene is up to 10 times more likely to contract breast cancer, and a mutation of the BRCA1 gene is related to 10% of all breast cancer cases in Australia. However, importantly, having a mutated gene does not, in itself, guarantee the growth of a cancer (Geneticshomereference.gov: 2011).
The most common form of testing for a mutated BRCA1 gene commences when a blood sample is taken, and the patient’s BRCA1 gene base code is examined.
If there are any serious imperfections in the gene code, then it is highly likely that a mutation has occurred to the BRCA1 gene, and the patient is informed as such (Healthwise: 2011). However, this highly invasive test can cause extreme anxiety and, if every medical practitioner notified relatives if cancer patients so that genetic testing could be conducted, many of the relatives of these cancer patients would suffer further anxiety, while additional financial strain would be placed on the already limited resources
available.
Genetically, a mutation of any of the tumour suppressing genes, but particularly the BRCA1 and BRCA2 genes, will cause a heightening of the chances of contacting breast cancer. Environmental and lifestyle factors that may promote the growth of breast cancer include exposure to electro-magnetic or nuclear radiation, obesity, childbearing, hormone replacement therapy, and obsessive alcohol consumption (PHG Foundation: 2010).
Treatment of breast cancer usually entails the utilisation of a number of options, including chemotherapy, surgery, radiation therapy, and anti-hormonal therapy (Caring4Cancer: 2011). However, while all of these treatments are extremely invasive, they have been proven to be effective for the vast majority of patients and for most patients, there is no alternative. After treatment, additional screening is conducted every six months, so as to check that the cancer has completely subsided.
Much debate exists as to whether breast cancer is a Mendelian or a complex disorder. However, there is more than one type of breast cancer; the most common being infiltrating ductal carcinoma. Although some strains of this disease are definitely related to a single gene, other strains, including infiltrating ductal carcinoma, have not been found to be linked to any one gene but rather a combination of environmental factors and a number of genes (Caring4Cancer: 2011). As such, having a mutated BRCA1 gene does not guarantee that a cancer will develop, as a number of other key factors would also have to be present.
The relationship that is entered into between a doctor and a patient is, as the Hippocratic Oath suggests, a completely confidential and private one; “Whatever in connection with my professional practice… I will not divulge” (Various authors: 1995 adaptation).The Information Privacy Act of 2009 states that “The use and disclosure of genetic information is only legitimised when:
* “The health service provider reasonably believes that there is a serious threat to the life, health or safety of a genetic relative of the patient” * “The use or disclosure to the genetic relative is necessary to lessen or prevent that threat”
(The Queensland Government: 2011)
The law clearly stipulates that if the lives of genetic relatives of the patient, such as children, are seriously endangered, a patient’s confidentiality can be broken in the stead of preventing serious harm. However, in this scenario, there is no confirmed ‘serious threat to life’ and as such, if Jane’s doctor was to inform her children of her mutated gene, then his actions could be deemed as being an infringement of Jane’s ethical and legal right to confidentiality.
Genetic information is, like all other medical information, a strictly confidential matter, and in this scenario it is important to remember that a child only has a 50% chance of having an identical gene as that of the mother. As there is no confirmed, and therefore arguably no serious, threat presented, it would likely be deemed illegal for Jane’s doctor to breech confidentiality.
Wordnetweb.princeton (2010) defines confidentiality as “The level of official classification for documents… available only to persons authorised to see documents so classified”. In the scenario in question, the only people authorised to observe documents relating to Jane’s genes are her doctor, and any doctors that Jane’s doctor wishes to discuss the matter with; in a strictly professional sense.
According to pinoydocs.com, the duty to warn is “An ethical obligation to tell people of a danger”. In this scenario, the people who are in need of warning are Jane’s children, as the danger is that they may also have a mutated BRCA1 gene, which would significantly increase their chances of contracting a life threatening disease.
There are a number of reasons that Jane may have for not wishing to inform her children of her mutated BRCA1 gene, such as a desire for privacy. However, it is vitally important to realise that there is no way of fully comprehending Jane’s reasoning. For example her children may have been adopted or IVF, and she may wish for this to remain private; a privacy which would be compromised if they were to be tested for the gene. Primarily, it is important to note that Jane’s reasons are just that; her own, and as an adult, she is believed to be able to make responsible decisions about her own personal information, and her decision to not inform her children must be respected and complied with by her doctor.
If Jane does inform her children, there may be a number of severe negative effects. Her children may suffer undue anxiety; having the gene does not, in itself, guarantee the growth of a cancer. Alternatively, neither child may even have the gene at all. Additionally, relationships often govern ethics, and if Jane’s children were to be informed, then the mother/child relationship may then suffer undue negative feelings, or a lack of trust. If Jane’s children were to be informed, then potential harm may be avoided. However, if the children were to have a mutated BRCA1 gene, a hypothetical situation in itself, then nothing may result; there is only a heightened chance of cancer growth, rather than any guarantee. As such, Jane’s decision may be a wise one; why should she place her family in turmoil if there is only a chance that any harm will actually materialise?
The duty to warn can only override the right to confidentiality if there is a serious, and therefore confirmed, threat to life. Even if Jane’s children actually have the gene, there is no evidence of any imminent threat posed by Jane’s actions. Breeching confidentiality may lead to Jane, and eventually the general public, losing trust in the medical practice, which could result in serious further problems including refusal to present and refusal of treatment. Even though Jane’s children may appreciate receiving the information in the short term, it is likely that they and in turn the general public would begin to question the value of patient confidentiality. Furthermore, as the mutation is linked to around 10% of all breast cancers, should the doctors of all of these patients, potentially tens of thousands of people, break confidentiality? This could lead to a slippery-slope effect, wherein eventually, confidentially is no longer valued or upheld; an immeasurable catastrophe for the health care system.
In conclusion, this report has found that there is not sufficient reasoning for Jane’s doctor to break patient confidentiality. To do so may cause serious harm to Jane and her family, which may culminate in a complete family breakdown. As well, harsh consequences for her doctor may ensue, as he would likely be deemed to be breaking the law by unjustifiably compromising a patient’s right to confidentiality.
Reference List 1. Caring4Cancer (2011), How Is Breast Cancer Treated? http://www.caring4cancer.com/go/breast/treatments(accessed on 28/06/2011) 2. Disputed Authors (2005), Hippocratic Oath; 1995 Adaptation http://www.pregnantpause.org/people/hippo.htm (25/06/2011) 3. Geneticshomereference.gov (04/7/2011), What is DNA?, http://ghr.nlm.nih.gov/handbook/basics/dna (accessed on 21/06/2011) 4. Google (2010), Define: Protein http://www.google.com.au/webhp?hl=en&tab=ww&q=genetics%20protein%20#hl=en&q=protein&tbs=dfn:1&tbo=u&sa=X&ei=9rUmTsuNM4HkrAf6wLnACQ&ved=0CCAQkQ4&bav=on.2,or.r_gc.r_pw.&fp=26a90ea62259913b&biw=791&bih=798 (accessed on 27/06/2011) 5. Healthwise (2011), Breast Cancer Gene Testinghttp://www.webmd.com/breast-cancer/breast-cancer-brca-gene-test(accessed on 11/02/2011) 6. Johnstone, M. (1989) Bio Ethics, National Library of Australia: New South Wales. (accessed on 10/07/2011) 7. National Cancer Institute (06/01/2011), BRCA1 and BRCA2: Cancer Risk and Genetic Testing, http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA (accessed on 23/06/2011) 8. PHG Foundation (2010), Genetic and Environmental Factors Linked With Breast Cancer http://www.phgfoundation.org/news/5513/ (accessed on 29/06/11) 9. Pinoydocs (2007), Glossary: Duty to Warn, http://www.pinoydocs.com/glossary.asp (accessed on 01/07/2011) 10. Sciencedaily.com (18/02/2010), Allele, http://www.sciencedaily.com/articles/a/allele.htm (accessed on 23/06/2011) 11. The Queensland Government (2011), Using and Disclosing Genetic Information, http://www.privacy.gov.au/law/act/genetic (accessed on 30/06/11) 12. Thomson, C. (8/03/2008) Confidentiality and privacy: beyond legal duties, http://www.mja.com.au/public/issues/178_06_170303/editorials_170303-1.html (accessed on 21/06/11) 13. Wordnetweb.princeton (27/01/2010), Genetic Mutation, http://wordnetweb.princeton.edu/perl/webwn?s=genetic%20mutation (accessed on 23/06/2011) 14. Wordnetweb.princeton (30/01/2010), Confidentiality, http://wordnetweb.princeton.edu/perl/webwn?s=confidential (accessed on 06/07/2011) 15. Yourgenome.org (05/11/2010), Glossary: Gene, http://www.yourgenome.org/glossary/ (accessed on 21/06/2011)
Appendices
Appendix 1
The Scenario
Appendix 2
Images of Double Helix
The
Confidentiality vs. Duty to Warn Conundrum
GenEthics:
The
Confidentiality vs. Duty to Warn Conundrum
This report will examine the ethical conundrum of patient confidentiality vs. a doctor’s duty to warn a patient of a potential health risk (see Appendix one for scenario). Primarily, this report will argue that patient confidentiality cannot be overruled, as there is not adequate legal or ethical reasoning to do so and as such, Jane’s doctor should not inform her children of their potential mutated gene.
A gene can be defined as ‘A sequence of DNA that carries the information required to make a molecule, usually a protein’ (Yourgenome.org: 2010). Deoxyribonucleic acid, …show more content…
or DNA, is made up of genes and is contained in the nucleus of cells in the human body and its purpose, simply put, is to instruct the body on how and when various proteins should be constructed (Geneticshomereference.gov: 2011). These instructions are constructed, and subsequently differ from organism to organism, by the pairing and subsequent alignment of four bases; adenine thymine, guanine and cytosine. This alignment is known as a double helix (See Appendix 2 for image).
Proteins, which are made up of amino acids, are an essential part of all living organisms and are necessary for growth and muscle development (Google Dictionary: 2010).
In humans, when a male sperm cell and a female egg cell combine to produce a zygote, specific genes from the two parents are combined. The genes that are selected for this new child are based on their dominant or recessive qualities.
Genetic mutation is defined by Wordnetweb.princeton (2010) as being ‘Any alteration in the inherited nucleic acid sequence of the genotype of an organism’. This mutation can occur for a variety of reasons; exposure to radiation, environmental factors (including ultra-violet light) or genetic construction …show more content…
errors.
Male sperm cells contain either an XY or XX pattern on their chromosome; an XY pattern eventuates in the creation of a male, while an XX pattern eventuates in a female. Females only receive X chromosomes and as such, they always contribute X chromosomes to a child, whereas a male can contribute either an X or a Y chromosome to the child, as he received both. In this scenario, Jane received a mutated BRCA1 gene from her father, as well as a normal BRCA1 gene from her mother. Subsequently, Jane had two children; a boy and a girl, with a husband who is not a carrier of the mutation. Jane’s children’s pattern of genealogical inheritance in relation to the BRCA1 gene is demonstrated in the table below:
(Blue squares represent egg cells contributed by Jane, while red squares represent sperm cells contributed by Jane’s husband.) | N (representing a normal BRCA1 gene) | N (representing a normal BRCA1 gene) | M (representing a mutated BRCA1 gene) | MNThis would result in a child carrying the mutation. | NMThis would result in a child carrying the mutation. | N(representing a normal BRCA1 gene) | NNThis would result in a normal BRCA1 gene being inherited. | NNThis would result in a normal BRCA1 gene being inherited. |
The above table illustrates that there is only a 50% chance of either child inheriting a mutated BRCA1 gene. This means that there is no guarantee that Jane’s children will have contracted the gene. However, the BRCA1 gene is a gene which, after mutation, is linked with increased likelihood of contracting breast cancer. The BRCA1 gene belongs to a class of genes known as tumour suppressors. Hence, when the gene is mutated, and can no longer do the job it was intended for and the patient becomes far more prone to contracting cancer. According to Cancer.gov, a patient who has a mutated BRCA1 gene is up to 10 times more likely to contract breast cancer, and a mutation of the BRCA1 gene is related to 10% of all breast cancer cases in Australia. However, importantly, having a mutated gene does not, in itself, guarantee the growth of a cancer (Geneticshomereference.gov: 2011).
The most common form of testing for a mutated BRCA1 gene commences when a blood sample is taken, and the patient’s BRCA1 gene base code is examined.
If there are any serious imperfections in the gene code, then it is highly likely that a mutation has occurred to the BRCA1 gene, and the patient is informed as such (Healthwise: 2011). However, this highly invasive test can cause extreme anxiety and, if every medical practitioner notified relatives if cancer patients so that genetic testing could be conducted, many of the relatives of these cancer patients would suffer further anxiety, while additional financial strain would be placed on the already limited resources
available.
Genetically, a mutation of any of the tumour suppressing genes, but particularly the BRCA1 and BRCA2 genes, will cause a heightening of the chances of contacting breast cancer. Environmental and lifestyle factors that may promote the growth of breast cancer include exposure to electro-magnetic or nuclear radiation, obesity, childbearing, hormone replacement therapy, and obsessive alcohol consumption (PHG Foundation: 2010).
Treatment of breast cancer usually entails the utilisation of a number of options, including chemotherapy, surgery, radiation therapy, and anti-hormonal therapy (Caring4Cancer: 2011). However, while all of these treatments are extremely invasive, they have been proven to be effective for the vast majority of patients and for most patients, there is no alternative. After treatment, additional screening is conducted every six months, so as to check that the cancer has completely subsided.
Much debate exists as to whether breast cancer is a Mendelian or a complex disorder. However, there is more than one type of breast cancer; the most common being infiltrating ductal carcinoma. Although some strains of this disease are definitely related to a single gene, other strains, including infiltrating ductal carcinoma, have not been found to be linked to any one gene but rather a combination of environmental factors and a number of genes (Caring4Cancer: 2011). As such, having a mutated BRCA1 gene does not guarantee that a cancer will develop, as a number of other key factors would also have to be present.
The relationship that is entered into between a doctor and a patient is, as the Hippocratic Oath suggests, a completely confidential and private one; “Whatever in connection with my professional practice… I will not divulge” (Various authors: 1995 adaptation).The Information Privacy Act of 2009 states that “The use and disclosure of genetic information is only legitimised when:
* “The health service provider reasonably believes that there is a serious threat to the life, health or safety of a genetic relative of the patient” * “The use or disclosure to the genetic relative is necessary to lessen or prevent that threat”
(The Queensland Government: 2011)
The law clearly stipulates that if the lives of genetic relatives of the patient, such as children, are seriously endangered, a patient’s confidentiality can be broken in the stead of preventing serious harm. However, in this scenario, there is no confirmed ‘serious threat to life’ and as such, if Jane’s doctor was to inform her children of her mutated gene, then his actions could be deemed as being an infringement of Jane’s ethical and legal right to confidentiality.
Genetic information is, like all other medical information, a strictly confidential matter, and in this scenario it is important to remember that a child only has a 50% chance of having an identical gene as that of the mother. As there is no confirmed, and therefore arguably no serious, threat presented, it would likely be deemed illegal for Jane’s doctor to breech confidentiality.
Wordnetweb.princeton (2010) defines confidentiality as “The level of official classification for documents… available only to persons authorised to see documents so classified”. In the scenario in question, the only people authorised to observe documents relating to Jane’s genes are her doctor, and any doctors that Jane’s doctor wishes to discuss the matter with; in a strictly professional sense.
According to pinoydocs.com, the duty to warn is “An ethical obligation to tell people of a danger”. In this scenario, the people who are in need of warning are Jane’s children, as the danger is that they may also have a mutated BRCA1 gene, which would significantly increase their chances of contracting a life threatening disease.
There are a number of reasons that Jane may have for not wishing to inform her children of her mutated BRCA1 gene, such as a desire for privacy. However, it is vitally important to realise that there is no way of fully comprehending Jane’s reasoning. For example her children may have been adopted or IVF, and she may wish for this to remain private; a privacy which would be compromised if they were to be tested for the gene. Primarily, it is important to note that Jane’s reasons are just that; her own, and as an adult, she is believed to be able to make responsible decisions about her own personal information, and her decision to not inform her children must be respected and complied with by her doctor.
If Jane does inform her children, there may be a number of severe negative effects. Her children may suffer undue anxiety; having the gene does not, in itself, guarantee the growth of a cancer. Alternatively, neither child may even have the gene at all. Additionally, relationships often govern ethics, and if Jane’s children were to be informed, then the mother/child relationship may then suffer undue negative feelings, or a lack of trust. If Jane’s children were to be informed, then potential harm may be avoided. However, if the children were to have a mutated BRCA1 gene, a hypothetical situation in itself, then nothing may result; there is only a heightened chance of cancer growth, rather than any guarantee. As such, Jane’s decision may be a wise one; why should she place her family in turmoil if there is only a chance that any harm will actually materialise?
The duty to warn can only override the right to confidentiality if there is a serious, and therefore confirmed, threat to life. Even if Jane’s children actually have the gene, there is no evidence of any imminent threat posed by Jane’s actions. Breeching confidentiality may lead to Jane, and eventually the general public, losing trust in the medical practice, which could result in serious further problems including refusal to present and refusal of treatment. Even though Jane’s children may appreciate receiving the information in the short term, it is likely that they and in turn the general public would begin to question the value of patient confidentiality. Furthermore, as the mutation is linked to around 10% of all breast cancers, should the doctors of all of these patients, potentially tens of thousands of people, break confidentiality? This could lead to a slippery-slope effect, wherein eventually, confidentially is no longer valued or upheld; an immeasurable catastrophe for the health care system.
In conclusion, this report has found that there is not sufficient reasoning for Jane’s doctor to break patient confidentiality. To do so may cause serious harm to Jane and her family, which may culminate in a complete family breakdown. As well, harsh consequences for her doctor may ensue, as he would likely be deemed to be breaking the law by unjustifiably compromising a patient’s right to confidentiality.
Reference List 1. Caring4Cancer (2011), How Is Breast Cancer Treated? http://www.caring4cancer.com/go/breast/treatments(accessed on 28/06/2011) 2. Disputed Authors (2005), Hippocratic Oath; 1995 Adaptation http://www.pregnantpause.org/people/hippo.htm (25/06/2011) 3. Geneticshomereference.gov (04/7/2011), What is DNA?, http://ghr.nlm.nih.gov/handbook/basics/dna (accessed on 21/06/2011) 4. Google (2010), Define: Protein http://www.google.com.au/webhp?hl=en&tab=ww&q=genetics%20protein%20#hl=en&q=protein&tbs=dfn:1&tbo=u&sa=X&ei=9rUmTsuNM4HkrAf6wLnACQ&ved=0CCAQkQ4&bav=on.2,or.r_gc.r_pw.&fp=26a90ea62259913b&biw=791&bih=798 (accessed on 27/06/2011) 5. Healthwise (2011), Breast Cancer Gene Testinghttp://www.webmd.com/breast-cancer/breast-cancer-brca-gene-test(accessed on 11/02/2011) 6. Johnstone, M. (1989) Bio Ethics, National Library of Australia: New South Wales. (accessed on 10/07/2011) 7. National Cancer Institute (06/01/2011), BRCA1 and BRCA2: Cancer Risk and Genetic Testing, http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA (accessed on 23/06/2011) 8. PHG Foundation (2010), Genetic and Environmental Factors Linked With Breast Cancer http://www.phgfoundation.org/news/5513/ (accessed on 29/06/11) 9. Pinoydocs (2007), Glossary: Duty to Warn, http://www.pinoydocs.com/glossary.asp (accessed on 01/07/2011) 10. Sciencedaily.com (18/02/2010), Allele, http://www.sciencedaily.com/articles/a/allele.htm (accessed on 23/06/2011) 11. The Queensland Government (2011), Using and Disclosing Genetic Information, http://www.privacy.gov.au/law/act/genetic (accessed on 30/06/11) 12. Thomson, C. (8/03/2008) Confidentiality and privacy: beyond legal duties, http://www.mja.com.au/public/issues/178_06_170303/editorials_170303-1.html (accessed on 21/06/11) 13. Wordnetweb.princeton (27/01/2010), Genetic Mutation, http://wordnetweb.princeton.edu/perl/webwn?s=genetic%20mutation (accessed on 23/06/2011) 14. Wordnetweb.princeton (30/01/2010), Confidentiality, http://wordnetweb.princeton.edu/perl/webwn?s=confidential (accessed on 06/07/2011) 15. Yourgenome.org (05/11/2010), Glossary: Gene, http://www.yourgenome.org/glossary/ (accessed on 21/06/2011)
Appendices
Appendix 1
The Scenario
Appendix 2
Images of Double Helix