Fragile X Syndrome: A Mother’s Story

Posted on: April 17, 2008  |   Author: Justin
Filed Under: Center for Health Law Studies Symposia, Distinguished Speaker Series   |   Leave a Comment

During session four of the symposium, Clare Dunsford, Associate Dean in the College of Arts & Sciences at Boston College, delivered a heartfelt presentation about a genetic disability that affects her son. The disease is widely known as Fragile X Syndrome (FXS). Speaking as a mother of a son who has FXS, Professor Dunsford described how the disease has influenced and affected her son’s life. Professor Dunsford also spoke about how the improved study of gene identity may one day bring notions of “human perfection” to reality. On the other hand, human perfection will strip her son of the qualities he possesses, such qualities as the wisdom to say “I want to be just the way I am.”

FXS is the most common cause of inherited mental impairment. FXS is a genetic condition that causes a mutation in the genes that can be passed from generation to generation. FXS occurs when genes don’t produce enough essential protein that is needed by the body’s cells, causing the brain to develop abnormally. The level of impairment of FXS depends on the amount of protein produced by one’s genes. Symptoms can range from mild learning disabilities to more severe cognitive disabilities. The most extreme form of FXS is known as mental retardation.

What is most interesting about the disease is that it can be passed on by individuals who have no signs of the genetic mutation. For instance, in some families, a newly diagnosed person may be the first in their family to display symptoms of the disease. The National Institute of Child Health and Human Development (NICHD) is the main funding source of research concerning FXS. Because of the increased understanding of gene identity within the last fifteen years, researchers have learned a great deal about FXS’s structure. Many agree that it’s only a matter of time before FXS’s structure and function will be discovered. Once discovered, scientists will be able to identify the mutation and destroy it before it can multiply.

There is no doubt that the day FXS is cured will be a day of celebration. The mutation brings with it a host of issues that affect not only the child, but parents and extended family members. Reading from her book, Spelling Love with an X, Professor Dunsford suggest, however, that the reason why she and others love her son so much is related to the fact that he has FXS, a disease which brings with it innocence and compassion.

Healthy Living…But at what cost?

Posted on: April 10, 2008  |   Author: Megan
Filed Under: Distinguished Speaker Series   |   1 Comment

Wendy K. Mariner’s distinguished speaker lecture focused on whether there is a duty to be healthy. Much of Mariner’s commentary revolved around differing reactions throughout society to a potential health duty. Interestingly, Mariner revealed that health plans can require employees to take part in health memberships. However, health plans cannot make a reward contingent on employees reaching a certain health standard. As one would suspect, these plans create enormous tensions. In a society struggling with obesity, addictions, and numerous chronic diseases, one wonders how these problems are going to be diminished. It makes sense that a way to alter individual’s behaviors is by providing rewards. While it would be discriminatory for health care providers to not cover someone simply because they were obese, by providing incentives (based on doctor’s recommendations) for each individual person to meet certain health goals, it might be a start to a healthier America.

The problem is that many of these problems might not be from over-eating or not exercising, rather they may be a result of a pre-disposed genetic condition. Thus, you would have two different categories of people to treat. Those who could be provided with nutrition or exercise coaches and those who may have to be put on a prescription plan. Thus, involving an individual’s health care provider would be important as reward programs would need to take the individual circumstances of each patient into consideration before deciding on the reward requirements. This might end up adding to health care costs as doctors might charge fees for these consultations. At the end of all this brainstorming however, is the constant question of whether this takes away an individual’s free choice?

Ultimately, Mariner recommends that as a society, we need to take a look at the way people behave and why they behave a certain way. The closer we can get to answering those questions, the more likely we will be able to come up with efficient wellness programs which will positively effect the status of health care in America.

If independently we worry about being able to work out health risks, how is the legislature going to work them out? Mariner discussed several situations were employers have taken matters into their own hands. One health company attempted to dock employee salary if he or she did not reach certain health standards. For example, they would be docked five dollars pay if their cholesterol was too high. The company ended up turning the program into a voluntary program after people became upset. Another case dealt with a company not hiring an individual after nicotine was found in his system. This lawsuit has survived two motions to dismiss. Even if the company loses in the long run, this case has stirred up plenty of controversy. It raises the question of whether an employer can determine hiring based on health choices, rather than job performance standards. However, the argument can always be made that certain health standards might lead an employee to have better job performance.

In England, physicians are refusing to operate on some individuals until they stop smoking. These are the novel actions that are starting to filter into the healthcare system. Individuals with chronic diseases are starting to be seen as public health threats. New York City started to do surveillance of individuals with chronic diseases without patient consent. Mariner raised questions of whether national security is taking the place of personal responsibility. On the other side of the debate are individuals concerned that personal liberties are being infringed upon.

Mariner concluded her lecture with thoughts for the future. In considering whether laws imposing a duty are necessary, it may be important to take into account that personal responsibility is not bringing about changes. Thus, in order to cut back on the national spending and health crisis in America, it might be necessary to create a duty to maintain a certain health standard.

As discussed above, Mariner’s discussion was intriguing and thought provoking. While I agree that something needs to be done to curb the health crisis, I cannot help but think that imposing a national standard of maintaining good health will be a tough standard to enforce. There are so many different degrees of health; physical vs. mental; genetic vs. environmental – how would the legislature develop a national guideline? I do agree that something needs to be done. It is a difficult position. Such guidelines would ideally help Americans to live longer, healthier lives; but at what cost? Some citizens would likely find that this infringement on their ability to choose their actions is a greater sacrifice than longevity. Personally, I would like to see a healthier America and feel that an incentive program rather than a discipline program may be a more feasible and positive route.

Is There a Duty to be Healthy? Social Solidarity and Personal Responsibility for Health

Posted on: April 4, 2008  |   Author: Michelle
Filed Under: Distinguished Speaker Series, Health Information   |   Leave a Comment

Is there a duty to be healthy? According to Professor Wendy Mariner, there is a growing emphasis on health obligations today resulting from (1) a lack of government activity in the protection of the environment, the workplace, and consumer products; (2) an increase in chronic diseases as the leading causes of death; and (3) increases in healthcare costs. While all three issues pose unique concerns to Americans today, the rising costs of healthcare is perhaps the most demanding and notorious, causing experts and policy makers to point to behavioral health and prevention to save critical dollars for the system.

The resulting emphasis on being healthy accordingly influences legal obligations, with health reformers pushing for either social health insurance plans or actuarially fair insurance plans. Professor Mariner noted the HIPAA statute as an example, which prohibits insurance companies from discriminating on the basis of health factors. However, while HIPAA prohibits altering insurance rates to avoid covering certain conditions, there are several exceptions health insurance companies can utilize in order give the same affect as health screening. For example, they can establish incentives for clients to participate in wellness programs in order to take advantage of premium discounts – discounts that would violate HIPAA if they were designed to discriminate against adverse health conditions, but are perfectly acceptable as long as they are not contingent on satisfying a health standard. Here, the government has stepped in to at least limit such incentives so the discount cannot exceed 20% of the premium.

As a result of the current emphasis on prevention to achieve healthcare cost savings, employers save money only in short term, but later experience much higher expenditures are after employees reach the age of 50. Additionally, the government will be burdened with longer pension payments for those employees who experience increased longevity.
Professor Mariner further noted that health status is strongly correlated with income, with chronic conditions more commonly linked to lower incomes populations. She expressed a viewpoint that health is really a class based system, with the primary determinants of health status being income, education, housing, occupation, environment, behavior, and genetics. Such being the case, she poses the question of where the higher healthcare costs comes in: are they really health related, or are they class related?

There is evidence to suggest higher healthcare costs are – at least in some part – class based. While social stratification may not be the intended determinant of who pays more for healthcare, Professor Mariner did point out that higher healthcare costs are not directed a job stress, which primarily affects middle and upper class white collar workers, but rather are directed at obesity and smoking, adverse health behaviors largely associated with the lower class. Professor Mariner does not go so far to say that healthcare costs are not at all health related, but rather warns if they are class or cost related – as she says they often are for employers – than need to treat all conditions equally and be more serious about personal responsibility.

Professor Mariner explained that many researches, in analyzing how people behave and why, suggest an approach of soft paternalism to restrain choices. For example, employers are watching health of employees. Some may dock employees if they don’t measure up on certain health standards, while other more healthy employees can earn rewards. For example, in Rodrigues v. Scotts Co., an employee was fired by landscaping company after they discovered nicotine in a urine sample, even though he never smoked on the job. In a more extreme case, an English employer refused treatment to an employee broke his ankle because he could not quit smoking. Such harsh examples of employer involvement in health begs the legal issue, to what degree do we allow employers to condition employment on the basis of health?

While Professor Mariner did not provide a conclusive answer as to what degree of involvement employers should have in their employee’s health, she does believe that medicine – personal medical conditions – and public health – public health threats and disease surveillance – are merging. Professor Mariner concluded that with intertwining of public health and medicine, healthcare consumers need to think carefully about the laws, and protecting both. It is not just that everyone is personally responsible for their health, but it is also about supporting the institutions that make it possible for people to stay healthy. A healthy and safe environment is just as important as personal responsibility, and consequently, health should be treated as a both and individual right and a community right.

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