Note.  While some of the scientific information contained in this article is outdated, it is useful as an example of my ability to tackle sensitive and complex topics. Biotechnology in Healthcare (a British publication) invited me to write this peer-reviewed article for them after I had given a presentation on the topic at the annual BIO (Biotechnology Industry Organization) Conference in 1996.  Publication tear sheets are available upon request.  JMK

Creating Effective Biotechnology Education Programs

Judith M. King and Glenn Miller, Ph.D. 

Judith M. King

has worked in communications for over twenty years, the last seven of which have been in biotechnology.  Currently she is Education/Communications Manager for Genzyme Genetics, the genetic diagnostics unit of Genzyme Corp.’s General Division.  She is responsible for developing several physician education programs offered by the Genetics division and evaluates a wide variety of external education efforts to determine the unit’s level of involvement or support.

Glenn Miller

is a Senior Scientist with Genzyme Genetics.  He is responsible for the clinical studies laboratory and oversees a number of collaborations designed to develop appropriate protocols for testing and counseling for complex disorders.  Dr. Miller’s laboratory also performs genotype/phenotype correlation studies using newly developed proprietary multiplexing technology in collaboration with biotechnology and pharmaceutical partners.

ABSTRACT

KEY WORDS: primary care physicians, predisposition to disease, genetics, genetic diagnostics, genetic education, risk factors, heritable disease, genetic counseling.

Worldwide interest in genetics continues to intensify as the identification of genes associated with many diseases proceeds at a rapid pace.  The uncovering of genetic risk factors and the development of diagnostic tests for major adult onset diseases like breast and colon cancer have brought many new issues and challenges to light.  Education is crucial not only to medical professionals but to all segments of society.  This paper addresses the urgency with which education needs to be undertaken; provides examples of several populations in need of genetic information and why; illustrates certain methods of delivery currently in use by commercial, research, and academic leaders.

INTRODUCTION

The genetic basis for many diseases becomes clearer daily.  The identification of previously undefined genes and the understanding of the role played by these genes as causes of disease are opening vast areas of medicine to genetic analysis.  As genetics expands beyond primarily prenatal and pediatric applications to this broader scope of diagnostic and predisposition testing, the range of health care providers using genetic information will also increase.   Concomitantly, the patient population as end user will expand as well.  Clearly, the rapid rise in new genetic discoveries and the development of diagnostic capabilities are far outpacing the education necessary to those who will be most impacted.

Genetics is moving from a narrow specialty to become a significant component of every physician’s practice.  Yet most physicians have had very little formal genetics training.  This creates a challenge and opportunity to develop and implement broad educational efforts and sophisticated information delivery systems to help health care providers use these powerful genetic tools appropriately and effectively.  The ultimate challenge lies in bringing physicians quickly up to speed and keeping them current as new developments occur.  The post school age lay public’s genetic education requires a more creative effort since this segment of the population neither pursues nor has access to formalized educational opportunities as frequently as do those in the medical profession.

KEEPING KNOWLEDGE CURRENT WITH DEVELOPMENTS

There is every indication that the Human Genome Project will continue to identify critical human disease genes at an ever increasing pace.  The ability to test for defects in these genes is likely to outstrip the medical community’s ability to treat the associated disease and the public’s ability to use the information appropriately.  Due to the presymptomatic nature of many genetic tests, primary care physicians will be the focal point of patient interaction.  Because new genetic information is advancing so rapidly, it is becoming increasingly difficult for health care providers to remain current.   The expanded use and complexity of genetic tests will demand that an immediate and dramatic increase in physician and nurse education must occur.  Therefore, it is imperative that the genetic community develop effective methods of education for the health care provider that will facilitate an accurate and useful understanding of genetics and genetic testing. Somewhat less urgent, yet equally important, is the genetic education of the lay public.

WHO NEEDS TO KNOW?

It is now becoming clear that genetic factors are strongly linked not only to relatively rare inherited disorders, but that almost every non-infectious disease is likely to have a genetic component.  Recent surveys in Canada, the United States, and Britain have shown that the public is grossly ignorant of the discoveries of science and of the way science works.1   Understanding of the science of genetics and its implications for future medical care will enable the public to address the complex issues brought to bear by genetic information as it relates to them, and will prepare them to make informed decisions about themselves and family members on a number of levels.

There is much public debate over the issues surrounding genetic privacy.  Although the insurance industry already uses genetic data from family histories and cholesterol tests to determine an applicant’s risk, the dramatic increase in genetic testing capabilities makes the consumer even more vulnerable to discrimination.  Perhaps it is only through direct legislative intervention that the potential for discrimination can be diminished.  While many legislative efforts are underway to mitigate this critical situation, a massive educational effort is also needed to enlighten public representatives so that they may direct their efforts in as an informed and educated manner as possible.

As the human Genome unfolds, the technology derived from it stimulates a number of unanticipated circumstances.  An interesting case in point is a recent article in The New York Times that illustrates the need for science education for members of the judicial community.  The article states, “In a growing number of civil lawsuits, criminal cases, and appeals court hearings, judges are increasingly being asked to bring some [science] experience to the table,”--especially in molecular biology and genetics.  The genetic issues being argued before the courts today are not only requiring judges to determine findings based on complex scientific data, but will require new case law and new precedents.

Testing for susceptibility to heritable diseases can present unique psychosocial problems.  Negative test results may not be sufficient to relieve anxiety, and positive results may compromise patient compliance with risk reduction measures.  As the demand for testing and counseling grows, health care providers will be faced with new challenges and dilemmas; they must be appropriately equipped to take the lead in ensuring that developments in genetics are used to the benefit of all.3

Medical professionals will also need to arm themselves with knowledge of genetics and genetic testing as a matter of practicality.  It is likely that practitioners will be expected to offer these tests or face the potential for liability should they fail to provide their patients with these technological advances and appropriate counseling.

CURRENT EDUCATION EFFORTS

Many organizations, societies, academic institutions, and commercial companies have undertaken the responsibility of developing and providing genetic education programs to a broad public. The targeted recipients of this new knowledge vary widely, and the methods of delivery must be designed to accommodate this very broad population’s learning abilities and requirements.

For example, today’s adults were not exposed to a robust conception of genetics when they were students, and today’s adolescents, if they stay in science class, rarely fare better.   However, study of the biomedical understanding of patients in a self-help group who had a genetically transmitted metabolic disorder showed that, when members of the lay public  have a personal interest, they learn to select among various information sources.  As a result, they develop a significant, functional competence in a complex field.

A Public Agenda Foundation study5  of the general population showed that, given a 1-1/2 hour intervention, ordinary citizens can formulate environmental policy just as scientists do.  The appropriate intervention is key to the success of this and other facets of genetic education.

The science museums that are offering the public a variety of interactive exhibits that promote interest in all levels of science is one example of highly innovative thinking.  Visitors of all ages are encouraged to discover in a stimulating environment.  Many of these museums are seeking collaborations with biotechnology companies to develop a meaningful genetics display as an interesting means of education.4   This type of partnership is attractive in that it creates a positive and rewarding experience for everyone concerned.

It is most important, however, that consumers learn about not only the science of genetics, but the risks and limitations involved in testing for genetic disease.  Besides the consumer education programs offered at the annual International and American societies of Human Genetics meetings and genetic counseling conferences, there appear to be few mechanisms for this type of education.  Consumer level courses could be made part of any conference that targets genetic education of physicians and taught very successfully by genetic counselors who are trained to explain genetics to the lay person in a non-directive manner.

Many task forces have been formed to examine genetics, genetic testing, privacy, ethics, regulatory issues, etc.  While the primary objective of these committees is to recommend policy, they also serve to educate the participants about each of the other sectors involved.  For example, each representative member brings an expertise and a perspective that is unique to the discussion, thereby providing all members with a broader understanding of the issues at hand.  Two of the sectors represented on these committees who gain significant educational value are the health insurance industry  representative and the legislator.

In response to the judiciary’s recent predicaments in ruling on genetic findings, the Einstein Institute for Science, Health and the Courts in Bethesda, Maryland, has begun a national program to educate one thousand US state and Federal judges in genetics and molecular biology over the next two years.  Lessons from this program, which is funded by the Human Genome Project, will also be used in regional programs for Federal, state and municipal judges.2

Genetics curricula in medical school, which, until recently, were minimal, is also being expanded to accommodate this relatively new science.  This training will prepare emerging physicians to effectively use their genetic knowledge in clinical practice.  As one example, the College of Human Medicine at Michigan State University has had a problem-based human genetics curriculum since 1974.  However, the school recently revised the second phase, “Track II,” of their program to address the significant advances being made in genetics and the anticipated impact on clinical practice.  Track I of this two phase program encompasses the more traditional curriculum, including perinatal medicine, which briefly covers amniocentesis for advanced maternal age and Down syndrome.  Track II incorporates the basic science materials into “focal problems,” spread over a two year period, thereby allowing students to build a sound knowledge base over time.6

Currently practicing physicians have not had this advantage and require a more significant post-graduate educational component.  To address this important issue, the genetics community makes available to today’s primary care provider a wealth of genetics information that is deliverable across many mediums.  Symposia, newsletters, and other familiar methods of delivery continue to play an important role in the education process.  However, the educational focus has taken a significant turn to the genetics of medicine.

Telecommunications advantages provided by the Internet and other technologies have taken medical education far beyond traditional methods of delivery.  This not only provides physicians with many different opportunities for keeping current with today’s advances in genetic technology, it also permits those physicians who are in rural settings to access this education without leaving their practices.

POINTS TO CONSIDER

It is important to note that while there are many valuable education programs available to a broad segment of the population, there most assuredly is room for expanded effort.  There are certainly interesting methods of delivery being overlooked or segments of the population who are not being considered.  In addition, it is important to include not only the pure science of genetics but the ethical, legal, and social impacts that genetic information will have on those who will receive it.  In this light, programs will have to be tailored not only to the educational level and needs of the audience, but to the likely social milieu to which the recipients of such educational efforts will return.

If one assumes that an educational effort of this scope and magnitude must occur in the near future, the logical question then is who will be providing this type of educational experience.  This effort will require personnel with an obvious expertise in genetics and genetic testing, along with a sensitivity to the ethical and social impact of genetic information.  Depending upon the educational level of the audience, this role could be filled by properly trained nurses, genetic counselors, Ph.D. level molecular geneticists, or physicians.

A significant obstacle to the successful distribution of educational opportunities will be obtaining a sufficient level of funding for these programs.  It is imperative to the success of this endeavor that a number of the traditional sources of educational funding as well as novel funding sources be developed to enable the broadest range of contact and program development possible.

CONCLUSION 

The use of genetics will inevitably have an impact on the lives of everyone.  It is critical to the responsible use of this revolution in medicine that the care givers have a complete understanding of the use and consequences of genetic information.  It is equally critical for the receivers of this information to be able to appropriately evaluate and question the appropriate use of testing and the results of that testing in their daily lives.

For the medical community and the population at large to make use of such complex probabilistic information, a large scale educational effort must be mounted.  This effort should be available to a broad range of individuals and geared to specific interests as well as educational levels.  The consequences of not beginning this process in earnest results in a medical community unable to make use of the advances that genetics has and will continue to offer, and a general public ignorant and fearful of medical advances that hold significant health benefits if used responsibly.  It is incumbent upon the genetics community at large to spearhead the effort to increase scientific knowledge and critical evaluation of the coming genetic revolution.

References:

  Griffiths, AJF,  What Does the Public Really Need to Know About Genetics?  Am. J. Hum. Genet. 52:230-232, 1993.

  Blakeslee, S, Genetic Questions are Sending Judges Back to the Classroom.  The New York Times, 4/2/96

  Macdonald KG, et al.  A sociobehavioural perspective on genetic testing and counseling for heritable breast, ovarian and colon cancer. Can Med Assoc J (CANADA), Feb 15 1996, 154 (4) p457-64

  Grinell S Reaching the Nonschool Public about Genetics. Am. J. Hum. Genet. 52:233-234, 1993

  Doble J, Johnson J (1990) Science and the public Vol 1:Searching for common ground on issues related to science and technology.  The Public Agenda Foundation, New York In: Grinell S Reaching the Nonschool Public about Genetics. Am. J. Hum. Genet. 52:233-234, 1993

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