Genetical Research

GenBank [32] is a text-numeric database of genetic sequences with more than 28 billion bases in 22 million sequences (January, 2003) from genetic research. The collection of all publidy available sequences is annotated with information such as sequence description, source organism, sequence length, or references. The database, estabhshed in 1967, is updated daily and produced by the National Center for Biotechnology Information (USA). 

Colchiciae (23) is a toxic substance occurring ia Colchicum autumnale, it coataias the aucleus of pyrogaUol trimethyl ether. Colchiciae has beea used ia the treatmeat of acute gout, and ia plant genetics research to effect doubling of chromosomes. 

After 1900, genetic research—but not research on nucleic acids—blossomed. Nucleic acids were difficult to work with, hard to purify, and, even though they were present in all cells, did not seem to be very interesting. Early analyses, later shown to be inconect, were interpreted to mean that nucleic acids were polymers consisting of repeats of some sequence of adenine (A), thymine (T), guanine (G), and cytosine (C) in a 1 1 1 1 ratio. Nucleic acids didn t seem to offer a rich enough alphabet from which to build a genetic dictionary. Most workers in the field believed proteins to be better-candidates. 

Kaplan, J. (2000), The Limits and Lies of Human Genetic Research Dangers for Social Policy, Routledge, New York. 

Biochemical and genetic researchers divide the proteins into three groups S-poor, i.e. sulfur poor, S-rich, i.e. sulfur rich, and HMW-prolamins, i.e. high molecular weight prolamins. 

Riess, O., Berg, D., Kruger, R. and Schulz, J. B. Therapeutic strategies for Parkinson s disease based on data derived from genetic research. /. Neurol. 250 13-10,2003. 

At the Institute for Bioethics, Health Policy and Law at the University of Louisville, my colleague Gabriela Alcalde helped me in conceptualizing the key issues and also took the lead in drafting two articles we coauthored on the topic. Dr. Mary Anderlik coauthored a paper with me on genetic research in which pharmacogenomics was a key element. Dr. Carl Hornung of the Department of Medicine contributed indispensable data analysis on the survey and coauthored Chapter 1 of this volume. 

In a nationwide interview survey conducted in the fall of 2001 by Peter D. Hart Research Associates, Inc., respondents were asked whether genetic research will result in medical treatments and cures for diseases. Forty percent said that it will almost certainly happen, and 53% said that it will probably happen (Peter D. Hart, 2001). When asked whether many serious diseases will be eradicated as a result of genetic research, 20% said that it will almost certainly happen and 54% said that it will probably happen. The responses on genetic discrimination are particularly interesting. When asked whether health insurance companies will use genetic information to deny people coverage if they are predisposed to diseases, 32% said that it will... 

The data contain a wealth of information. In this chapter we report the findings from five areas of inquiry (1) willingness to participate in genetic research (2) trust in various entities to perform genetic research (3) perceptions of the affordability of pharmacogenomic-based medications (4) concerns about the confidentiality of genetic information and (5) stability of views during the interview. 

One assumption frequently made by researchers and policy makers about individuals willingness to participate in genetic research (as well as other forms of medical research) is that as the research involves greater disclosure of personal health information, individuals will be less likely to participate. Prior research supports this assumption (National Health Council, 2000, p. 18). We asked the following four questions (Questions 4A, 4B, 4C, 4D) related to this issue ... 

A. How likely would you be to participate in genetic research if you knew the results would be anonymous, meaning that nobody—not even the researchers—would know which test came from which person ... 

We anticipated that individuals willingness to participate in genetic research would vary according to the confidentiality of the research and results and according to the potential benefit or outcome of the research. We therefore expected the highest percentages of respondents saying that they would be "very likely" to participate in research when the results would be anonymous and when the development of a new treatment was a possible outcome. 

There are some significant differences according to race/ethnicity, education, and income of respondents. In general, the percentages of whites and Asians who said they would be very likely or somewhat likely to participate in genetic research are about 8 to 10 points higher p < 0.05) than African Americans and Hispanics. 

FIGURE 1.1. Percent Very Likely to Participate in Various Methods of Genetics Research (by Age). 

B. Trust in Various Entities that Perform Genetic Research... 

Genetic research may be undertaken by various individuals and entities in the public and private sectors. We attempted to ascertain the level of trust for different entities by asking the following related questions (Questions 6A, 6B, 6C, and 6D) ... 

A. How much trust would you have in genetic research conducted by universities and medical schools ... 

FIGURE 1.2. Percentage With "a Great Deal of Trust" in Various Organizations to Conduct Genetic Research (by Race/Ethnicity). 

Trust in universities and medical schools to conduct genetic research is most strongly associated with an individual s educational level. Race/... 

FIGURE 1.13. Response Shift During Interview in Views of Genetic Research. 

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