Week 3: Learning goals and objectives

In Week 3 you will learning about the…

  • Definitions of health and healthcare disparities.
  • Reasons which drive disparities in health and healthcare.
  • Relationship between “Disparity” and “Inequity.”
  • Key initiatives in place to address healthcare disparities.
  • Ways in in which hi tech genomic science might affect health care disparities, both positively and negatively.
  • Role of “social epidemiology” in helping to reduce health care disparities.

Your objectives are to…

  • Consider arguments which would support (or refute) this statement: “Until health care becomes truly personalized, race and ethnicity will continue to guide medical treatments.”
  • Assess the current status of health care disparities in your own state (or community).
  • Suggest the kinds of changes in society (or your own community/state) which would help relieve healthcare disparities.
  • Explore the meaning of race.  A political construct?  Biologically encoded?  A proxy for class?
  • Provide an example(s) to support the statement: “To make the best use of genomic data, it will be essential for clinicians to be able to educate their patients about the beneficial applications of genomics, as well as its limitations within the context of cultural concerns.”
  • Agree/disagree that the inevitable march of genomic science will lead to the propagation of healthcare disparities.
  • Discuss why health disparities could be considered to be a “moral problem.”

Of all the forms of inequality, injustice in health is the most shocking and the most inhuman.

The Rev. Martin Luther King, Chicago, March 25, 1966

It is critical that health professional students and health practitioners understand the reasons underlying disparities in health and health care and what they can do to address them.

Health disparities are differences in the incidence, prevalence, mortality, the burden of diseases and other adverse health conditions or outcomes that exist among identifiable populations groups in the U.S. and around the world.

Health disparities can affect population groups based on gender, age, ethnicity, socioeconomic status, geography, sexual orientation, or special health care needs. For example, people with disabilities (e.g. functional limitations of movement, vision, hearing or problem-solving) have unmet medical needs and poorer overall health throughout their lives and, as a result, should be recognized as a health disparity group so more attention can be directed to improving their quality of life.

Primarily, health disparities occur among groups who have persistently experienced historical trauma, social disadvantage or discrimination, and systematically experience worse health or greater health risks than more advantaged social groups.

“Disparity” in the context of public health has begun to take on the implication of injustice.  An “inequity” is said to exist when “a health disparity is determined to be avoidable and unfair,” such as,

  • Health damaging conditions and behavior where the degree of lifestyle choices is severely restricted (e.g., lack of access to the most healthy food choices: unsafe neighborhoods or architectural features which restrict exercise or community;
  • Exposure to unhealthy stressful living and working conditions;
  • Feedback structures (health related mobility)…Sick people tend to move down the social scale, impoverishment degrades health status and limits health agency (poverty as a fundamental cause);
  • Issues of trust (e.g., the impact on African Americans and other minorities of breaches of trust such as in the “Tuskegee Study on Untreated Syphilis in the Negro Male” which lasted for 40 years from 1932-1972 under the auspices of the U.S. Public Health Services, and
  • Inadequate access to essential health and other basic services.

In that latter regard, It would be quite ironic and unfortunate if the very advances in medicine, including ‎those in the ‎personalized medicine space, that might help make it possible to stem the rising ‎costs of health care, ‎might not be realizable, in part, because the problem of reasonable access (to  personal healthcare records (PHR) or certain healthcare providers) has not yet been responsibly addressed.

Demographic Patterns of Disparities

Extensive literature reviews have summarized evidence showing that African-Americans and Hispanic Americans (and to a less well-documented extent, American Indians, Alaska Natives, Asian Americans, Native Hawaiians and other Pacific Islanders) receive less medical care in general, as well as less intensive care, than comparable white patients.

This pattern has been found in the use of high-technology interventions and for more general medical and surgical procedures and treatment of chronic conditions such as diabetes and cancer. (See: Breast Cancer Survival)


President Obama signs the Affordable Care Act

President Obama signs the Affordable Care Act

In 2008, a Professor of Social Epidemiology at Harvard’s School of Public Health offered some advice to (then) Presidential candidate (Barack Obama) as a means to address issues aimed at leveling the healthcare playing field for all Americans.  That (now) President Obama took his (and other’s) advice is reflected (in one form or another) in the Obama “Affordable Care Act” (ACA) signed into law by President Obama in March 2010.

Specifically, under the ACA, racial and ethnic differentials in uninsurance rates are now greatly reduced.  For example, the black-white differential has been cut by more than half and the Hispanic-white differential by just under one-quarter. When the projected coverage gains are fully realized, long-standing racial and ethnic differentials in access to care and health status are likely to shrink considerably.

Genomics For All?

In asking how genomics can be used for the benefit of all, it is sobering to analyze how poorly and inequitably knowledge and tools have been used in the past. Genomics will certainly expand the opportunities but will probably widen the disparities, resulting in unbelievable advances and unbelievable inequities.

Some think genomics will lead to a single payer system because of problems in maintaining privacy and difficulties of insurance companies in determining which individuals to insure at what rates.

It has been said that within a decade many of us will be carrying our own genetic code around on a small card that will be taken to every physician visit. There is an opportunity to bring science benefits to bear on the individual; the hope is that will lead to a new world of prevention as each person becomes able to obtain a specific prescription for what must be done in order to be as healthy as possible.

The bottom line is that the first approach, individual use of science to improve one’s own health, is likely to blossom.  What will be much more difficult is to apply genomic knowledge for the benefit of everyone.  Despite the fact that much time is spent thinking about errors that might be made, that thinking is almost totally about errors of commission.

Yet historically, the greatest harm has been through errors of omission: things not done, the science not applied, the vaccines not given, the medications not available in Africa because of their cost, the water supplies not treated, and so on.

Indeed, chronic diseases like cancer and heart disease are rising fast in low– and middle-income countries, striking far younger populations than in rich countries and causing much worse outcomes.  Chronic diseases are finding a foothold among much poorer people, who are less able to afford the medicines and treatment that might mitigate their illnesses. In rural Ghana, for example, minimum-wage earners with diabetes spend 60 percent of their incomes on insulin. (See: Chronic Disease in Poorer Countries)

Chronic diseases that are treatable in developed countries are often death sentences in developing countries, the report notes. For example, 90 percent of children with leukemia in high-income countries can be cured, but 90 percent of those with that disease in the world’s 25 poorest countries die from it.

Great care must be exercised in designing research studies aimed at elucidating the relationship between genomics and race in the context of its translation to clinical care and, especially in the Age of Personalized Medicine.

Complicating the potential to achieve that outcome is, ironically, the field of genomics, itself and, specifically, the findings of Epigenomics, the fastest-moving field of research in all of medicine and the study of the layer of information that surrounds the genetic code and its multigenerational biological consequences. (See the full discussion of the topic in unit #8 and read Before You Know It)

Challenges Going Forward

There will be dilemmas about how to use the tools and power of genomics, but the greatest challenge will be in a widening equity gap, the failure to use science for the poor, the foreign, the unnoticed and disenfranchised.

The tools that are needed must be clearly identified and their cost made cheaper. The questions must be, Where is a test needed, and how can that test be made available more cheaply?

If things are done correctly, current actions can harness the basic tools of science not only for the benefit of the rich and the powerful, the leaders, but also as a way of giving the very poorest people a chance for optimal health.

Unless there is public funding to narrow the gap between the rich and the poor, we are unlikely to succeed in providing everyone with a chance for health. (See: Inequality in Capital)

The most important decision we can make is to declare that to the best of our ability, we will use genomics for the benefit of both individuals and society.

We need to persuade the funders that we need research on population use, genetic risk reduction, and biomarkers for the biggest problems, both in this country and in the world. We need global approaches to understand the interaction of everything in an environment, but also to understand disease problems in poor countries.

The challenge to public health genomics is to overcome inequitable allocation of benefits, the tragedy that would befall us if we made the promise of genomics only for those who could afford it and ultimately have access to the tools of genomic medicine needed to manage one’s healthcare. (See: Personalized Medicine and Healthcare)

Genomics, however–like most human tools–is a double-edged sword. This is especially true in the context of understanding and eliminating health disparities. Unquestionably, genomics provides novel insights into the causes of – and susceptibility to – disease and adverse reactions to drugs. If used carelessly, however, genomics and associated technologies may exacerbate disparities at multiple levels because of

  • Unequal application among human populations;
  • Reinforcement of racial stereotyping, identified by the Institute of Medicine as a primary factor in the unequal treatment of minority patients;
  • Overshadowing of perhaps more important determinants of disparities, including poverty, racism, unequal access to health care, and cultural practices;
  • Exacerbation of existing disparities in access to care owing to increased costs that are likely to be associated with genetic tests and procedures; and
  • Conflation of genetic variation at the population level with that among individuals.

Analysis of genomes from around the world establishes that there is a biological basis for race. As a case in point is the fact that with mixed race populations, such as African Americans, geneticists can now track along an individual’s genome, and assign each segment to an African or European ancestor, an exercise that would be impossible if race did not have some basis in biological reality.

Indeed, genome research has shown that all humans, whatever their race, share the same set of genes.  Each gene exists in a variety of alternative forms known as alleles, so one might suppose that races have distinguishing alleles, but even this is not the case.  A few alleles have highly skewed distributions but these do not suffice to explain the differences between races.  The difference between races seems to rest on the subtle matter of relative allele frequencies. The overwhelming verdict of the genome is to declare the basic unity of humankind. (See: Race and Genetics)

Social Epidemology

It is worth mentioning that most of the potential drawbacks of genomic technologies do not rest on genomic and related technologies themselves but on the interpretation of genomic data within the sociopolitical and economic context of societies. Indeed, that is the aim of social epidemiology – that branch of Epidemiology that studies the social distribution and social determinants of health, both specific features of, and pathways by which, societal conditions affect health.

Genomic data will present a new array of opportunities and challenges. Data collection should be extended to as many diverse populations as possible. To achieve this goal, innovative funding mechanisms and additional commitments from genome scientists will be required.

It is also critical to assess non-genetic factors, which vary substantially among populations and may interact in important ways with genetic risk factors. Analyses of these effects and interactions can be especially powerful in the context of large, long-term prospective studies.

Finally, to make the best use of genomic data, it will be essential to educate students, practitioners, and the public about the beneficial applications of genomics, as well as its limitations.

In the critical area of education, consider how ethnicity and socioeconomic status affect access to medical services. Even when health care is available, a lack of scientific knowledge can impede a patient’s ability to understand and influence their healthcare.

Descriptions of medical problems are often mired in complicated vocabulary, and even the definitions are not very meaningful unless put into a context that the patient can understand.

Henrietta Lacks and her cancer cells

Henrietta Lacks and her cancer cells

For example, consider the case of Henrietta Lacks, a poor, black Southern woman from whom doctors took cancer cells in the 1950s without her permission. Those cells turned out to be uniquely reproducible (i.e. “eternal”), thereby launching a multimillion-dollar medical industry. (See: Interview with R. Skloot)

Untold profits were made from those cells, yet neither Henrietta Lacks nor her descendants received compensation. Meanwhile, surviving family members are too poor to afford health insurance.

When Deborah Lacks asked a physician about the HeLa cell line obtained from her mother, he read to her from a medical genetics book “its atypical histology may correlate with the unusually malignant behavior of the carcinoma.”

Misinformation and pseudoscience promulgated on the web—never mind the tsunami of information being generated by genomics research—can further aggravate the issues of getting the right healthcare at the right time, and because many websites are easier to understand than medical genetic texts, they can have a tremendous impact on healthcare decisions.

If the genomic era is to be one in which genomics, used wisely and effectively, achieves significant improvements in human health, public health must hold genomic literacy and avoidance of disparity as primary goals. Without genomic literacy, implementation will be practically impossible; With disparity, implementation will be inadequate and unethical.

In the words of Vence Bonham, Senior Advisor to the NHGRI Director of Genomics and Health Care Disparities, “We are entering into an exciting period of a better understanding of the genetic components of disease. How that understanding is translated to society and the public—not to mention clinical care–becomes extremely important.”

Indeed, “Those most in need must not be the last to receive the benefits of genetic research” (C. Bustamante)

Resources and Discussion

Questions for Discussion

  • What are the major socioeconomic factors which lead to health disparities?
  • What effect(s), if any, will increased genomic knowledge and application have on the array of issues underlying health care disparities, in general, but with particular reference to the Obamacare Health Plan?
  • What kind of policy(ies) will be needed in order to help a widely diverse public understand genomic science well enough to make informed health care decisions?
  • Is Inequality a choice?
  • Can “genomics for all” ever be a realistic goal in the U.S. where “Inequality for all” is becoming commonplace?
  • Based on our understanding of epigenomics and its potential impact on the developing human embryo, how might we envision a world in which our society limits certain freedoms now to protect the health of those more than a generation in the future?