The Challenges and Impact of Human Genome Research for Minority Communities

proceedings from a conference presented by
Zeta Phi Beta Sorority, Inc., National Educational Foundation
July 7-8, 2000, Philadelphia, PA

Zeta Background
Acknowledgments
Introduction
Foreword
Zeta NEF Purpose

Conference
Conference Mission
Conference Objectives
Research Plans
Conference Agenda
Conference Summary
Workshop I Summary
Workshop II Summary
Workshop III Summary
What's Next?
Photographs
Human Genome News article

Presenters
Dr. Aristides A. Patrinos
Dr. John Quackenbush
Dr. Georgia M. Dunston
Dr. Mary Kay Pelias
Dr. Fatimah Jackson
Dr. Christopher Adams
Dr. Rosalind P. Hale
Dr. Margaret C. Werner-Washburne
Rev. Dr. Deborah P. Wolfe
Dr. Jeroo S. Kotval
Betty K. Mansfield
Issie L. Shelton Jenkins, Esq.
Phyllis Griffin Epps, Esq.
Dr. Kathryn T. Malvern

Contact Information
Board of Managers
Presenters
National Educational Foundation

The United States has embarked on an unprecedented experiment in the financing and delivery of health care. It is called market-driven health care. At the center of this system is the investor owned, for-profit institution: the market-driven managed care organization which is both the insurer and the provided of health care, which raises capital through offering stock, and which uses a variety of cost-saving and cost-shifting strategies to control expenditures.

Strategies for cost-savings and cost-shifting used by insurers include: risk-rating (medical underwriting); policies with exclusion clauses; restrictions on coverage; selective marketing; co-payments; deductibles; capitated or discounted payments to health providers; and utilization review, which can occur before, during, and after care; and disease management.

At the same time, advances spurred by the Human Genome Project allow the prediction – now and in one’s future – of human disease conditions and an individual’s response to drugs and other pharmacological agents. These tests can provide insurers with advance information about future health care costs. Persons seeking health insurance in the individual markets are subject to risk rating – where the premiums charged are based on the likely health care costs for the individual. Some of the new genetic tests provide the most accurate methods of predicting costs available currently.

Institutions are not moral agents, and make decisions impersonally in order to further institutional objectives – which in the case of market-based institutions is to capture market share. This is done by under-cutting one’s competition, showing a profit to their stockholders, and providing bargain prices to their clients (e.g., private employers and government).

There is concern that trust, which is a bedrock principle in the physician-patient relationship, would suffer – especially with respect to underserved communities and communities with historic experiences of institutional bad faith – as persons fear that their genetic test results would be misused for the purposes of cherry-picking healthy clients or to ‘redline’ entire communities in the interest of cost-savings. This would result in persons refraining from taking advantage of the fruits of the Human Genome Project to truly advance their health, and could further aggravate already existing differentials among minority communities and the majority population with respect to health care access. This would defeat the goal of achieving equal access, which is absolutely necessary to a just health care system.

Market mechanisms for distributing quality care are dependent on the purchasing power of the consumers or the bargaining power of those who represent the interests of minorities and underserved communities. Minority communities have traditionally suffered in such circumstances since they are disproportionately represented at the lower end of the socio-economic status scale and do not have the same social and political influence as majority populations.

Another ethnical concern about investor-owned companies providing health care is that earnings provided by the patients to obtain health care are not returned to the system in toto to provide quality care for increasing numbers of persons or better care for those who are already in the system, but are channeled to the stockholders. In this sense, use of genetic tests by a market-driven health care system, to cherry-pick healthy consumers in order to further the reward to stockholders is implicitly unfair to those who need ca re but cannot afford it.

I identify four ethical principles as central to any health care system: the just distribution of health care, concerns about quality of care, cost-effective care or efficiency, and trust. Genomic information available to a market driven institution intent on cost-savings for its survival raises concerns related to each of these ethical principles.