You can pose questions to prominent scientists, ethicists, journalists, and c
linicians about the subjects of their talks at this lecture series. Selected questions will be addressed in the Q & A portion of the lecture series. Just send your questions to
Anne Jennings (annej@exploratorium.edu)
.
PROGRAM 1 (APRIL 19) - Myths and Promises of the Human Genome Project
Hood
- "Opportunities and Challenges Arising from the Human Genome Project"
The Human
Genome Project proposes to decipher human heredity by mapping and sequencing all 24 human chromosomes. These data will allow us to identify and charqacterize the 100,000 or so human genes. This project will develop powerful new tools for deciphering t
he secrets of human chromosomes and genetics. This will lead up to a preventive medicine early in the 21st centruy that will focus on keeping people well. This Human Genome Project will also raise challenging social, ethical, and legal questions that so
ciety is ill-equipped to consider. I will discuss where we go from here.
An overview of both the short-term and long-term implications of the Human Genome Project. First, a di
scussion of the short-term implications of the genome project such as germ-line therapy, genetic screening, gene based discrimination, sex selection, and privacy. Second, a reflection on possible long-term implications such as genetic integriy, genetic d
iversity, accelerated evolution, and ecology.
The race to stake out the human genome has opened up a number of ethical issues - for individuals, for science and for business.
A discussion of media coverage--oversimplification of gene findings and how that may be warping the public's view of what's really possible. Also, how the media may be overstating the business potential of the Human Genome Projct.
PROGRAM 2 (April 26) - Identity v. Identification: Issues of Race, Privacy, and Information
There have been, and there will be, important discoveries of the Human Genome Project that are health-giving contributions. However, there is an inevitable gap between the diagnostic capacities of the Human Genome Project products and the the
rapeutic capabilities. This will produce a host of social, ethical, and legal problems which, at the moment, are not well appreciated or thought through. If we march down this path with a kind of naive optimism that discovery is, on balance, a "good thi
ng" we are buying into a lot of difficulties that might be addressed, circumnavigated, or lessened by some throughtful prior work.
Advances in genetics are making it possible to g
enerate increasing amounts of sensitive information about individuals. Although the potential benefits of this knowledge are substantial, there are also potential harms from undesired disclosures and unfair uses of genetic information. Many legislatures
have adopted or are considering laws to safeguard genetic information. These measures are often too narrow, too broad, or misdirected. The subject matter is novel and complex, and those who might be affected by the measures may have conflicting needs.
In some circumstances, it may be appropriate to bar the generation, disclosure or unfair use of genetic infomration--or to use a combination of these steps or other measures. The solutions may not always be clear; society will have to decide if fairness
requires equal tratment of genetic difference.
PROGRAM 3 (May 17) - Tough Choices: Assessing the Benefits of the Genome
There has been longstanding agreement on the ethical principles that should guide the introduction and delivery of genetic testing and screening. In fact,
new programs and services develop independent of these guidelines. Among the many factors that drive new programs are self-interest, including money, fame, and empire building. There is nothing new in the intertwining of medical care with self-interest,
but the extent of the problem may be more pervasive in genetics.
Examples of the role of conflicts of interest in the development of population screening and individual testing will be reviewed, using the examples of PKU, sicle trait, and cystic fib
rosis. The growth of managed care and vertical integration of health services creates different conflicts of interest, possibly with the same result: genetic testing without adequate educaiton and counseling, resulting in unconsented harm to patients.
Patients affected by genetic conditions sometimes find themselves unwitting pioneers on the frontiers of medical genetics. They and their families can represent an invaluable resou
rce for researchers who are striving to identify disease genes and understand how they have gone awry. However, it may take years before the contributions these families make of their medical histories and tissues translate into tangible benefits such as
improved ability to diagnose, trat, or potentially even correct a disorder. In the meantime, the disease continues to take its toll. In many cases, the research laboratories that find genesa re not equipped to provide diagnositc tests, and family membe
rs who want presymptomatic or prenatal testing have to wait for these discoveries to be taken up by clinical laboratories. Often, such new tests are considered "experimental" and are not covered by insurance, limiting their use to families who can afford
to pay out of pocket. Many people actually prefer to keep their insurance company--and even thei own physicians--unaware of their genetic tresting, fearful that they will not be covered if their genetic status is known.
Even when the gene for a spe
cific condition is found, it may turn out not to be the cause of all--or even of many--cases of the disease. Media attention to exciting advances in the understanding of the genetics of common diseases, such as breast cancer or Alzheimer's disease, can r
aise unrealistic expectations that tests will immediately be able to predict who will or will not be affected. At the same time, we are just beginning to learn about how different people may react to learning that they carry such a gene. Genetic technol
ogy is moving faster than we can assess its impact, and research is still needed to learn how to translate the new information into effective and humane care for people at risk.
Compared with other medical specialists, there are not very many medical
geneticists and genetic counselors. Furthermore, the current trend in American medicine is away from specialty care. However, most primary care providers are not comfortable addressing patients' concerns about hereditary conditions or explaining and co
ordinating genetic testing. Will they recognize genetic conditions well enough to know what to test for? Will they be able to thoroughly discuss reproductive options and the risks, benefits, and limitations of genetic testing? Will they be able to appr
opriately interpret the results and their implications? Who will pay for these tests and the time-consuming counseling they require? Can we handle all of this new information?
This presentation will explore some of the dilemmas faced by families
and their care-givers as we learn more about the genetic contributions not only to rare, but also to common diseases.
The Exploratorium, 3601 Lyon Street, San Francisco, CA 94123
