Bridging the Gap between Life Insurer and Consumer in the Genetic Testing Era: The RF Proposal
![handle is hein.journals/indana74 and id is 1385 raw text is: Bridging the Gap Between Life Insurer
and Consumer in the Genetic TestingEra:
The RF Proposal
CHRISTOPHER M. KEEFER!
INTRODUCTION
The last ten years have proven to be significant for the world of science.
Thousands of genes have been located on chromosomes by researchers from the
Human Genome Project (HGP).' Their research has led to the location of genes
responsible for conditions including, but not limited to, cystic fibrosis,2
Huntington's disease,3 some breast and ovarian cancers,4 and some forms of
* 3D. Candidate, 1999, Indiana University School of Law-Bloomington; B.B.A, 1996,
University ofNotre Dame. I would like to thank the following peoplelorganizations who aided in
developing this proposal: Midwest Alliance for Health Education; Barrett & McNagny, Attorneys
at Law, Richard D. Robinson, Esq.; Eleni Z. Angelopoulos, Esq.; Patricia . Bader, M.D.; Donald
C. Chambers, M.D.; John P. Gemi; Professors Roger Dworkin and Susan Stuart; J. Michael
Keefer, Esq.; William M. Daly, and Daniel F. McCarthy.
1. The HOP is a multibillion dollar initiative designed to map and sequence the genes in the
human genome. See Heather McClure, The Insurance Industry's Use of Genetic Information:
Legal andEthical Concerns, 28. HEALTH & Hosp. L. 231,231 (1995); Lori Whittaker, Clinical
Applications of Genetic Tesfing: Implicationsfor the Family Physician, 53 AM. FAM. PHYSICIAN
2077, 2077 (1996), available in LEXIS, GENMED Library, AFP File. The genome of an
organism consists of its haploid set of chromosomes. Humans have 23 pairs of chromosomes (or
46 total chromosomes). The 23 pairs of chromosomes are known as a diploid set of chromosomes.
Each parent donates one set of chromosomes from the pair (known as a haploid set) to the
offspring, giving it a diploid set (one haploid set from each parent). Genes are located on each
haploid set and are responsible for bodily functions. The HOP is focused on finding the location
of human genes on each chromosome in the haploid set See JAMES W. FRISTROM & PHILIP T.
SPIETH, PRINCIPLES OF GENETICs 47,132-33 (1980); NATIONAL CANCER INST., U.S. DEP'T OF
HATHAND HUMAN SER.VS., UNDERSTANDING GENE TESTING 2 (1995).
2. Cystic fibrosis (CF) is one of the most common genetic disorders causing death in the
white population. Pulmonary disease is responsible for 90% of CF-related deaths. Liver disease,
trauma, and suicide are responsible for the other 5% of CF-related deaths. See generally Garry R.
Cutting, Cystic Fibrosis, in 1 EMERY AND RIMOIN's PRINCIPLES AND PRACTICE OF MEDICAL
GENETICS 268 (David L. Rimoin et al. eds., 3d ed. 1997) [hereinafter MEDICAL GENETICS]
(discussing symptoms, genetic structure, diagnosis, and management of CF).
3. Huntington's disease (HD) causes a gradual deterioration of physical and mental
capabilities around the age of 40 and lasts for about 15 years, until death. See generally Michael
R. Haydn & Barry Kremer, Basal Ganglia Disorders, in 2 MEDICAL GENETICS, supra note 2,
at 2197, 2203-09 (discussing symptoms, diagnosis, genetic counseling, and management of
Huntington's Disease).
4. Present studies have shown that, although the majority of breast and ovarian cancers
develop sporadically, a small percentage (approximately 5-10%) of these cancers are genetically
related. See generally C. Michael Steel, Cancer of the Breast and Female Reproductive Tract,
in 1 MEDICAL GENETICS, supra note 2, at 1501, 1501-23 (discussing the genetic mapping of
heritable breast cancer).](ViewImageLocal?handle=hein.journals/indana74&div=51&collection=&method=preview&ext=.png&size=3)
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Bridging the Gap between Life Insurer and Consumer in the Genetic Testing Era: The RF Proposal
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