Access to Genetic information for commercial partners

 

 

The third group identified by Takala as having possible claims to have access to a persons genetic inform are “individuals and groups who enter into contracts, agreements and economic arrangements [sic…] This category embraces at least employers, employees, banks, insurance companies and business associates.”[i] There are three main groups whose access rights I am going to concentrate on here, these are employers, life insurance companies and health insurance organizations. One may think initially that both life and health insurance could be treated in the same way but as we shall see this may not necessarily be the case. Firstly though let us begin by considering the rights if any that employers may have to access the genetic information of their employees.

Are there any good moral reasons why an employer should ever have access to the genetic information of their employees, either as a group or individually because there may be good reason to think that employers could have access to one type of information and not to the other. Let us first look at the question of whether employers should ever have access to the genetic of individual employees. Kathleen Engle[ii] suggests that there may be four cases in which employers could have rights to access the genetic information of their employees. The first is identifying employees who are susceptible to developing specific diseases. Secondly, identifying employees who are particularly vulnerable to workplace hazards. Thirdly, genetic monitoring of employees who are exposed to workplace hazards and finally to access genetic information for use in health emergencies. We will consider each of these positions in turn to see whether there might be good reasons why an employer should have access in any of these situations and then consider that if access may be acceptable in some circumstances, what kinds of constraints and protection need to be in place to protect the rights of employees.

Firstly, should employers have access to the genetic information of individual employees on the ground that this would be useful in determining those employees who were at risk of developing specific diseases. The rationale behind this suggestion is that if employers have access to the genetic information of individual employees they can provide access to preventative medical care. This would have the effect of possibly reducing the time lost due to illness, a reduction in expenditure on health and disability insurance costs and better productivity from their healthy and happier employees. The suggestion is that responsible employers already engage in these kinds of activities, providing employees with health and wellness programs to increase the general wellbeing of their workforce and thus improve their productivity. Programs directed to those identified through genetic testing as at risk is simply a better and more efficient way for employers to provide this service. This does not seem unreasonable at least on the surface, but there is a central worry with respect to access to individual information and this is the possibility for abuse, this central concern will be discussed when all four possible reasons have been discussed. This not with standing to provide access to quality and well directed health and wellbeing programs for their employees seems to be a reasonable thing for employers to want to do and genetic testing appears to be a way in which this can be achieved. As noted by Engel “Several years ago, Wells Fargo implemented a twenty four hour disease management program for all its employees with diabetes. Although the Wells Fargo employees were already symptomatic, there is no reason why similar programs could not be implemented proactively with the goal of reducing the expression of genetic diseases.”[iii] This would as in cases where programs have been introduced retroactively have a possible positive impact on worker productivity and general health and well-being.

What of the second possible reason, that of identifying those employees who are particularly vulnerable to workplace hazards, are there good reason here to allow employers access to this information? If we consider the case put forward by Engel, that of beryllium we can see there may be some reason for us to think access may be appropriate. As Engel says

“there is evidence that some people may have a genetic predisposition to developing beryllium disease. Beryllium is a metal that is used in the manufacture of a wide range of products from fluorescent lights to automobile circuit boards. Genetic testing for the propensity to develop beryllium disease would enable employers to place vulnerable employees in positions where they would not be exposed to beryllium.”[iv]

While the case of beryllium seems to show that there may well be positive advantages to employers having access to this sort of information about their employees I am suspicious and somewhat cynical about the uses to which this information would be put by employers. The actual motivation behind offering such testing to employees could be rather than protect the employees from possible contact with toxins or chemical that they have genetic risks in relation to I suspect that the reason is more to protect the company itself from future claims by employees who develop problem associated with the chemical or toxin in question. An employee who undergoes genetic testing for a susceptibility and then decides that they are still happy to work with the chemical in question. This would seem to offer the company some defense in relation to any future claims made by that employee with respect to illness suffered as a result of exposure. This cynicism on my part aside however, there does seem to again be good reasons why we might consider employers requests for access to employee genetic information reasonable.

The third reason outline by Engel relates to the one discussed above, this is that the genetic monitoring of employees in hazardous workplaces could be beneficial to all concerned. This could be of particular use in situation where employees are or have the risk of being exposed to radioactive materials. Having regular genetic testing of such individuals would enable both the employer and employee to hopefully preempt any possible damage. Engel suggest that there may be a further reason and that is that “genetic monitoring could enable employers to identify workplace hazards that have not yet been identified as toxic. For example, if employees underwent regular genetic testing and the testing revealed unexplained changes in the employees’ genetic makeup, this information could be helpful in identifying toxins in the workplace.”[v] This again would seem to be a valid reason for employers to want access to this information particularly in those emerging industries or using emerging technologies where the risks involved to employees may not be fully known. Employers would be able to preempt any dangerous exposures or condition before they had the opportunity to cause wholesale damage to their workforce.

The third and final scenario offered by Engel is the usefulness of employers having genetic information on their employees in the situation where the employee becomes seriously ill whilst on the job. “For example, if an employers knew that and employee carried a gene that made susceptible to developing diabetes and the employee past out on the factory floor, the employer’s knowledge of the employee’s genetic propensity for diabetes could be valuable to emergency and other medical personnel.”[vi] Of all of scenarios that are put forward by Engel this one is the weakest. If this were the only reason offered by employers for having access to genetic information on individual employees then this seems a woefully insufficient reason to overturn an individuals right to genetic privacy.

As I said at the beginning of this discussion, there is a central concern that relates to all of these possible reasons why employers might have the right to have access to the individual genetic information of their employees, this is the concern that employers will use this information to discriminate against employees. If employers are given access to the individual information of their employees then there exists the opportunity for them to use this information to identify and rid themselves of costly employees. These would be employees who through either actual or potential genetic conditions could become more costly to an employer than either a genetically average or better than average employee. Employees could unless there exists sanctions and controls on employers quickly find themselves terminated or shuffled into dead-end jobs with no room for advancement or improvement. Hiring practices could also quickly become genetically discriminatory if employers, for any of the reasons offered above where allowed to access the genetic information of potential employees. These kind of activity have been seen already where companies refuse to hire people who have made insurance or workers compensation claims in relation to workplace injuries, or who have existing illnesses or injuries.[vii] As Zanville states, “these people running these organizations, they may use bean counters, but what they try to do is find a way to limit their costs, and they will use any means, whether it be genetic testing or and corporate structure or time and opportunity, and the reason we have to have laws is to deal with those outlaws, those people who just don’t want to obey laws and do the right thing.”[viii] It would be nice to think that all employers would only use the genetic information of individual employees to improve both the lives of the employees and the company itself in a way that was respectful to all parties. But as we have seen in the past this is never the case and there will always be employers who will use any information in any way to improve their bottom line. For this reason, unless there were some overriding reason, either attached to public safety issues or possible harm to other employees, there seems little reason fur us to think that employers should have access to the genetic information of individual employees.

What however of the second question, is there and reason why employers should have access to pooled genetic information on their employees. Engel suggests that there maybe to reasons why employers should be granted access to pooled information, they are to identify diseases the effect or will effect a significant number of their employees, and to reduce insurance costs for employers.[ix] I will not say very much about the second reason offered by Engle as it is tied intimately to the U.S. system of health and employment insurance and as such does not touch significantly on issues outside that area.

On the first reason however, there are some interesting points of note. The first is that it would appear that access to pooled information about employees does not pose the same threats to individuals with a company structure that individual testing does. This of course carries the proviso that the testing for the pooled information is carried out in such a way as to eliminate or at the very least minimize the chances of employers getting access to individual information through unscrupulous methods. If employers only know information about their employees as a group then it would be very difficult for any single individual or group of individuals to be discriminated against in the workplace. As Engel suggests there are ways in which this information could be of value to employers. “For example if employers knew that a significant number of their employees were susceptible to developing heart disease, they could put educational programs in place, have a nutritionist talk to employees about diet, or subsidize employee memberships in health clubs, all of which would have the same benefits as interventions based on individual level information without the accompanying risk of discrimination.”[x] In fact, it seems as if all of the reasons offered for employer access to individual information, with the exception of the last and weakest of all the claims, could be achieved with pooled information. As shown by Engle’s suggestion above claims with respect to susceptibility to disease can easily be handled with pooled information without endangering individual privacy. The same can be said for the claim with respect to vulnerabilities to workplace hazards. If pooled information showed that significant numbers of employees were susceptible employers could ensure that the hazards were well know, take step to educate about safety, ensure safety regulations were rigorously enforced and look at alternative methods which were less dangerous to the health of their workforce. Though it does need to be pointed out here that if the vulnerability rates were high enough and employer could conceivably choose to simply fire their entire workforce and hope that the next group did not possess the same level of vulnerability. This however would be a situation that would I think be extremely rare and ill advised for any company to undertake for a variety of reasons not associated with genetics. Finally pooled information could enable employers to monitor potential workplace hazards. If employees as a group were genetically tested on a regular basis then there overall genetic health and rates of mutation appears to be a good way of determining possible workplace hazards. It may even be better than using individual test results because it would rule out unknown individual susceptibilities through weight of numbers. For these reasons it seems that employers may be able to better argue the claim that they should have access to pooled information than they have for the same access to individual information. Access to pooled information however should only be allowed so long as the proviso mentioned above in rigorously enforced. There should be little or not chance that in the testing process involved in producing the pooled genetic information that it was possible for employers to gain access to or information from the results of any individual test.

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[i] Takala, "Who Should Know About Our Genetic Makeup and Why." p.260.

[ii] Kathleen Engel, "Can Employers Put Genetic Information to Good Use," Journal of Law and Health 16.1 (2001).

[iii] Engel, "Can Employers Put Genetic Information to Good Use." p.10.

[iv] Engel, "Can Employers Put Genetic Information to Good Use." p.11.

[v] Engel, "Can Employers Put Genetic Information to Good Use." p.12.

[vi] Engel, "Can Employers Put Genetic Information to Good Use." p.12.

[vii] Harry Zanville, "Genetic Testing and Employment Litigation," Journal of Law and Health 16.1 (2001).

p.61-64.

[viii] Zanville, "Genetic Testing and Employment Litigation." p.63

[ix] Engel, "Can Employers Put Genetic Information to Good Use." p.12.

[x] Engel, "Can Employers Put Genetic Information to Good Use." p.12.

SHOULD FAMILY AND REPRODUCTIVE PARTNERS HAVE ACCESS TO YOUR GENETIC DATA

 

One of the reasons offered for the over-riding of an individuals request to remain ignorant of their genetic information related to the possibility of this choice doing harm to others. The concept of harming others is central to claims about the rights of family members and reproductive partners having access to or being informed about the genetic makeup of persons to whom they have a relevant relationship. We will first consider the case of those who have a familial relationship with a person who has undergone genetic testing. What rights do these people have to either access to that information that results from the genetic testing or to be informed about any information that may have an effect on their own lives and well being and if there are such rights how wide a net do they cast in terms of the familial relationship.

Let us move back to our original example of Anne and her hereditary condition that will end her life in her mid to late forties after a period of suffering. Given that the condition in question is one that is hereditary it is clear that the information garnered from Anne’s genetic testing may have implications for people other than herself who bear a familial relationship with her. Take for example Anne’s mother Betty. She gave birth to Anne when she was 18 years of age and is now 43 years of age. Betty is already very close to the age at which symptoms of the condition will begin to manifest themselves if in fact Betty carries the gene as well. The question here is does Anne’s mother have a right to be told of the information that has come to light as a result of her daughters test in order that she may make a decision about whether or not she wishes to undergo testing to determine whether or not she will develop the disease. This question resolves itself into two main questions; the first does Anne have a duty, either morally, legally or prudentially to inform her mother of the results of her testing and to suggest that she should talk to her doctor about the possibility of testing and second, does Anne’ doctor or the person who has control over the results of her testing have a duty to inform Anne’s mother, with or without Anne’s consent.

If we consider Anne’s duty first, should she inform her mother about the results of her genetic testing? Before actually beginning to answer the question it is informative to consider some information arising out of a study of women who had undergone genetic testing for BRCA1/2 mutations, which predispose women to developing breast and ovarian cancer, particularly their responses and feeling in relation to disclosing the results of their testing to other people. It is of some importance to note that the women in this study had already been diagnosed with breast or ovarian cancer before they underwent the genetic testing which may in some way effect the responses they gave. The other point of note is that almost all of the women interviewed “had undergone testing to obtain genetic information for others, indeed, for 90% of the sample this was reported as being the most important, or the only, reason for undergoing this procedure.”[i] Even with this goal in mind, that the information they would be obtaining through the testing would be of benefit to others in their family, “the disclosure of genetic information was described as raising unforeseen moral dilemmas.”[ii] The first dilemma faced by a number of the women was that “while they were all prepared to disclose information to sisters and offspring, many had not considered that they might need to inform their brothers or other members of their family of origin and commented that that had been, or would be, difficult.”[iii] The second dilemma faced by these women was the question of when and how to provide the relevant information to members of their family, particularly cousins and other non-immediate relations. In addition to this “many women acknowledged that disclosing genetic information to their family conflicted with their obligation to care for their relatives, because the disclosure of this information could result in increasing their relatives’ anxiety about developing the disease.”[iv] What is interesting about these responses to the disclosure of genetic information to members of their family in all cases where the woman obtained a positive result from their genetic testing they “perceived themselves as potentially

forced into a situation in which they would be responsible for causing others harm.”[v]

As can be seen even in this situation where the women were already aware of their own diagnosis prior to testing and underwent testing for the express purpose of gathering information for other parties, there were still significant dilemmas and concerns faced by these by the process of passing on the relevant information.

Now if return to Anne and Betty in our original question, does Anne have a duty to inform Betty of the results of her genetic testing. It would seem that whether one was to take a Utilitarian, Deontological or even Virtue based approach to the question there are good reasons to believe that Anne does in fact have a duty or an obligation to provide her mother with the information she has obtained through testing. She will be providing her mother with vital information regarding a possible life threatening health issue. It is of course up to her mother what she does with this information. She may for herself choose whether or not to undergo a test to determine whether or not she has the genetic mutation in question. It also seems that Anne should and is morally obliged to tell her two sisters of the results of her genetic testing, even if their mother Betty undergoes a genetic screen and is found to carry the mutation that causes the disease. This is because given the disease in question is hereditary there is a chance (the magnitude of which should be explained to Anne by her doctor) that her siblings also possess the gene which will cause them to develop the disease. Again this is because this is vital medical information that may have wide ranging effects on the choices the her siblings make about their lives.

So If we have good reasons and I think that we do to believe Anne has an obligation to provide the information gained from her genetic testing to members of her family, what if any duties are there on Anne’s doctor or the testing facility to notify these same people if Anne fails to live up to this obligation. Can and should those people in possession of Anne’s genetic test results inform her relatives of the possible implications for their own health status the results of Anne’s testing has. One way to begin to consider this question, which will also offer us more reasons to think Anne has an obligation is to look at the concept of genetic information not being completely individual, rather being familial in nature. A number of writer’s[vi] have commented on this conception it has been suggested that a model of individual autonomy and confidentiality “ignores the fact that the results of genetic tests have implications not only for the patient, but also for their biological kin.” What this idea conceptualizes is the fact that while our particular genetic map, may be something that is unique to us, much like our fingerprints, unlike our fingerprints there is a real connection between our DNA and the DNA of our biological relatives. Now while I am not going to fully investigate the different types of models for dealing with the problems of genetic testing and familial partners as this has been well covered by Skeen in ‘Patients’ rights or family responsibilities?’[vii] and Bell in ‘Genetic secrets and the family’[viii] it is necessary to make a number of comments. Firstly as with the situation of Anne as an individual not wishing to know about her own genetic makeup this is not a case in which we can hope to formulate a general rule that will answer our questions in every situation. There will be times when as with the first case a patients doctor decides that the information obtained from genetic testing is sufficiently important to override the wishes of the patient not to be informed or no have their family informed. This should not however be seen as suggesting that there is a duty or obligation on the doctor in question to do this. Clearly in my view the obligation to give ones familial relations genetic information that will have an effect on them rests with the person who undergoes the test. Further as stated above this obligation should be out lined to them prior to the testing being undertaken. As Bell and Bennett have said, “there may well be, and arguably are, situations involving familial genetic information which would satisfy the requirements for disclosure by a doctor. But such disclosure would not be subject to a blanket rule: it would depend on a range of factors specific to the case at hand, including the nature of the genetic condition and the precise genetic mutation.”[ix]

The issues of familial relations and genetic information seem only to be compounded when we look at the rights of reproductive or prospective reproductive partners in relation to genetic material. A 2003 discussion in the British Medical Journal outlines the very real problems associated with these questions. In the paper ‘Prenatal diagnosis requests for Huntington’s disease…..’[x] Tassicker and others discuss a hypothetical case where “A woman who is eight week pregnant discovers that her partner is at 50% risk of developing Huntington’s disease. He is not interested in pursuing predictive testing. The woman is adamant that she does not want a child who will develop Huntington’s disease in later life and requests a prenatal test.”[xi] What is at issue here is that if the fetus has the mutation for Huntington’s then this also amounts for a diagnosis for the father. The question that is central here is whether or not the pregnant woman’s wish to know the genetic status of her child will outweigh the rights of the child’s father to remain ignorant of his genetic condition. Firstly it is important to note that within the Australian legal landscape “decisions about prenatal testing can be made solely by the mother; the father’s consent (or even knowledge) is not required because the law states that these tests are on her body.”[xii] This legal stance is not without problems however. A pregnant woman choosing to undergo prenatal testing without the father’s knowledge or consent will be left in an unenviable situation if the testing is positive for the mutations. Firstly she will have to shoulder the burden of making decisions with respect to the fetus by herself and if she chooses to abort it the effects this will have on her partner and their relationship. Further there is the simple problem of knowing something about her partner that he does not know, the knowledge that he is going to develop Huntington’s may well alter the way she views their life together and the plans they have for it. Again this is a difficult situation like all of those outlined above and again it seems that the answer will be the same as that given above. Both of the partners should be counseled as to the issues and ramifications of the choices they are considering in some attempt to come to a solution that is suitable to them both and leaves neither of them in the situation the mother would be in if she tested without knowledge or consent. Failing this however, as stated previously, there are good reasons for us to override the wishes of the father in this case, both in terms of testing the fetus and of telling him the results of the test. This is similar to the conclusion reached by Tassicker et. al. which is that “as a general principle, a patient should be offered a test or procedure – if they are entitled to it – regardless of what others will think about it or do. Harm to others should be minimized through support and counseling of the patient. But information that might be relevant to other people should rarely (if ever) be withheld from the patient to protect those people.”[xiii]

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[i] N Hallowell, "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information," Journal of medical ethics 29 (2003). p.75

[ii] Hallowell, "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information." p.76

[iii] Hallowell, "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information." p.76

[iv] Hallowell, "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information." p.77

[v] Hallowell, "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information." p.77.

[vi] Hallowell, "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information."

Loane Skene, "Patients' Rights or Family Responsibilities?," Medical Law Review 6 (1998).

Dean. Bell, Belinda Bennett, "Genetic Secrets and the Family," Medical Law Review 9 (2001).

Michael. Parker, A Lucassen, "Concern for Families and Individuals in Clinical Genetics," Journal of medical ethics 29.2 (2003).

[vii] Skene, "Patients' Rights or Family Responsibilities?."

[viii] Bell, "Genetic Secrets and the Family."

[ix] Bell, "Genetic Secrets and the Family." p.161.

[x] Ros. Tassicker, Julian Savuescu., Loane Skene., Pam Marshall., Lara Fitzgerald., Martin Delatycki, "Prenatal Dianosis Requests for Huntingtons's Disease When the Father Is at Risk and Does Not Want T Know His Genetic Status: Clinical, Legal and Ethical Viewpoints.," British medical Journal 326.7384 (2003).

[xi] Tassicker, "Prenatal Dianosis Requests for Huntingtons's Disease When the Father Is at Risk and Does Not Want T Know His Genetic Status: Clinical, Legal and Ethical Viewpoints.." p.331.

[xii] Tassicker, "Prenatal Dianosis Requests for Huntingtons's Disease When the Father Is at Risk and Does Not Want T Know His Genetic Status: Clinical, Legal and Ethical Viewpoints.." p.332.

[xiii] Tassicker, "Prenatal Dianosis Requests for Huntingtons's Disease When the Father Is at Risk and Does Not Want T Know His Genetic Status: Clinical, Legal and Ethical Viewpoints.." p.333.

 

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