Sophia Kolehmainen 
(Council for Responsible Genetics, Cambridge, MA)
Peter Shorett 
(Council for Responsible Genetics, Cambridge, MA)
Sara Gambin 
(Department of Anthropology, University of California at Berkeley) 
Paul Billings 
(Council for Responsible Genetics and GeneSage, Inc., San Francisco, CA)

July 28, 2002

Senator Seward and members of the Committee:

Thank you for the opportunity to comment on the draft Genetic Discrimination Act (further referred to as the Model Act).

The Council for Responsible Genetics (CRG) is a national bioethics advisory organization based in Cambridge, Massachusetts. Since 1983, it has worked to increase public debate on the social implications of biotechnology. The CRG brings together scientists, lawyers, activists and health experts to advocate for the socially-responsible use of genetic technology. Our organization has considered the issue of genetic discrimination for over a decade, and maintains the only comprehensive database of its kind on state and federal laws on this topic. The CRG’s position on genetic discrimination can be viewed at The submitted comments do not represent an official position of the CRG, GeneSage Inc. or any other entities or institutions with which we are associated.

Insurance is a community benefit. Participants pay premiums to gain some measure of financial protection against the consequences of unexpected events. The insurance industry in the United States is flourishing. While some contraction has occurred in providers of health insurance for individuals over the last twenty years, there are still many companies selling life, disability and other insurance products. Market conditions have stimulated a vast array of product offerings allowing better than standard, standard and substandard applicants to receive contract offers today for many products. When discussing life insurance, it must be understood that as many as 99% of applicants can be offered some sort of contract under current market conditions.

Thus, legislation concerned with applying evolving DNA and genetic technologies to underwriting practices and policy issuance must be responsive to the beneficiaries of this community activity--taxpayers and consumers. The nation’s insurance system must be assessed and continually monitored so that it continues to adequately provide its social goal: the spreading of risk for unexpected financial loss across the community. It is in our society’s interest to ensure the broadest availability of insurance at the lowest price possible. People who have undergone genetic testing should be provided equitable access to affordable coverage, regardless of the newly identified “risk” factors that they present to insurers.

The insurance industry is generally not federally regulated. Chartered by each state in which it operates, an insurance company must conform to fair practices as defined in that state. Many states prohibit a variety of underwriting practices that are considered unfair or inappropriate; that is, the people of those states value rights and principles more than the potential cost savings that certain insurance underwriting strategies may provide. In surveys of state legislators, the insurance industry is widely viewed as the most powerful single business lobby in most states. This may explain why many business practices within the insurance industry including reasons and patterns for denial of contracts (redlining), broker malfeasance, and marketing strategies resulting in "over insuring" have not been well monitored or reformed. These issues and other oversight modifications need legislated reform before any new underwriting models and rules, as proposed in the Model Act, are applied. This Model Act is scientifically and technologically premature and will not protect large numbers of consumers against new instances of adverse genetic discrimination.

There is no compelling evidence that insurance companies will face undue financial burdens by providing reasonably priced contracts to people with genetic risks for conditions that are now identifiable . In fact, these risks are already part of current actuarial assessments, since genetic factors have fairly stable population prevalence over time (especially when compared with infectious diseases). The risks associated with new DNA tests have simply not, until recently, been subject to laboratory testing. Providing individuals with more knowledge of risks of any kind dose NOT necessarily change insurance purchasing behavior or produce adverse selection by groups or populations.

Presently there are very few genetic tests that have been properly studied in terms of the relative risk they confer in unselected, unbiased populations or the safety of their general application. The lack of this data along with high unit costs makes many DNA and genetic tests unattractive in insurance underwriting at present. There is nothing special about risk conferred by genes or DNA sequences as opposed to other risk factors, except the special role that genes have in human culture and history. Thus, we believe that the consideration of the use of genetics in insurance product underwriting cannot be divorced from a discussion of the fairness of underwriting practices in general.

In addition, the calculation of a genetically conferred risk must include the assessment of family history and physical characteristics (phenotype) along with the presence of DNA sequences. These correlations are key to interpreting the meaning of genotype data and risk. Any consideration of underwriting practices must acknowledge that the current cheapest way for insurers to genetically test applicants is to ask about family history data and if genetic or DNA testing has previously occurred. Measures of physical characteristics (like blood pressure) are essential parts of genetic risk assessment and must be considered part of any regulatory strategy or Model Act as well.

Finally, it has been clearly demonstrated that instances of genetic discrimination in health care and its financing exist, and that this issue represents a major concern to consumers. If it continues to occur or extends to other products that consumers value like life and disability insurance contracts, it will likely curtail whatever health benefits may be derived from well-studied tests with high predictive value specifically, and developments in human genetics in general.

In summary, the Model Act ignores pressing and problematic issues confronting regulators of insurance practices, such as current underwriting practices, their monitoring and fairness, while also failing to protect consumers against further adverse genetic discrimination. If enacted, it would set into place a unneeded system that only disadvantages consumers by implementing a misreading of human genetic science and the needs of consumers to be protected against adverse genetic discrimination.. These flaws are significant enough to undermine the stated purpose and aim of the Model Act, and serve to highlight the fact that premature legislation is dangerous to both industry and consumers. Carefully constructed regulation and public policy will however be needed in order to ensure the beneficial, fair and equitable diffusion of DNA and human genetic information in our society in the future.

Following is a brief synopsis of our critique of specific provisions of the Model Act:


Chapter 1:

Section 102:

The term “related by blood” is a fundamentally unscientific designation. This term may confuse the Act’s intended target: biologically related individuals. The “exception to prohibition on inquiry into genetic information” by insurers should not be included. The “certain policies” exception provides a dangerous loophole for insurers.

The role of genetics in the development of medical disorders remains poorly understood. While there are a number of clearly identifiable diseases where genes play an important role in causation (such as cystic fibrosis, Tay Sachs, sickle cell anemia, etc.), the severity and onset of most so-called genetic conditions are determined by the interaction between genetic, other biochemical and environmental factors. In most cases, genetic test data leads to probabilistic assessments not certain indicators. The degree of DNA or genetic test predictive value will also be subject to change as knowledge of disease factors develops. Given these continuing uncertainties, it should be clear that such phrases as “scientifically or medically believed to cause disease, disorder or syndrome” are overly-broad and unworkable.

Section 103:

The terms “statistically increased risk” and “genetic test” are vague. Leprosy is caused by an infection but genes are statistically associated with some of its manifestations. Family history and physical examination may be essential to assessing risk and assigning probabilities related to the results of DNA tests. Therefore, these should be considered parts of a “genetic test”. The ideas and language of this section are simplistic and will likely not conform with scientific data in the future.

Chapter 2:

The anonymous testing, newborn screening, and paternity exceptions are all inappropriate for a model law on life and disability insurance practices. These are standards that should be considered and regulated in other policies, in a more appropriate forum. We find the use of “informed consent” in this Chapter particularly problematic given current informed consent practices. Research shows that patients are routinely left un- or under-informed regarding the implications of health care decisions including undergoing DNA or genetic testing. The information these tests produce is hard to interpret. Consumers and patients are not being made adequately aware now of the risks (whether they be in experienced in insurance or employment settings) in consenting to a genetic test. Furthermore, this Act provides no standards for what constitutes “informed” non-coerced consent.

Chapter 3:

Subsection A must include language that prevents persons from using or storing genetic information received “inadvertently” through a health file or other means.

Chapter 4:

Current state laws that address genetic discrimination are already under-utilized. The extensive processes and lists described herein will only make the Act more ineffective and difficult to use as a legal tool. The Model Act should not weaken current protections

The $100,000 limit is far too low. The exception should only cover life insurance companies who currently specialize in large policy, substandard risk underwriting. If the insurer uses the options described in subsection A, use should be restricted to limited types of contracts. There should also be a guaranteed provision of affordable (standard) insurance if the results of genetic tests do not reveal known risk associated factors.

Chapter 5:

A $60,000 limit is egregiously low, and would have very serious consequences
for the disabled community in this country. If and when genetic tests come into widespread use, the likely result of this limit would be to legalize the exclusion of large numbers of people from disability coverage.

Chapter 6:

The “catastrophic disease” designation is arbitrary and without scientific justification. Basic statistical associations needed for proper actuarial assessment can not be reliably drawn from most genetic epidemiological data at present. No standards are presented in the Model Act for arriving at these agreed-upon levels of genetic risk assessment or actuarial practices. Insurance companies presently use varying definitions of fairness and proprietary practices for risk assessment reflecting levels of corporate risk aversion. There is no justification and potential harm to insurer and applicant in the creation of a list of catastrophic diseases and related genes under these uncertain circumstances.

Chapter 8:

The Act provides insufficient deterrents to prevent adverse discrimination. We suggest that criminal penalties be included as a consequence of violation.


In conclusion, this Model Act is scientifically and technically premature, does not meet a consumer or market need at present, and does not protect against adverse genetic discrimination; it appears to be only a symbolic gesture. We can not endorse it in its current form. A similar policy initiative has been suspended in the United Kingdom.

Any model act in this area of insurance law must be preceded by effective legislation concerning privacy, discrimination in health care financing products, and in regulation and oversight of endemic unfair practices that will only be made worse as “genetic risk underwriting” develops. The model’s terms and concepts need to be crafted with more specific definitions, and a more realistic and accurate assessment of current science.

GeneWatch: Current Issue
Volume 30, Issue 1: CRISPR & Gene Drives
Remembering the pioneering scientist, ethicist, and founder of the Council for Responsible Genetics.
From a longer letter, "A Call to Conservation With a Conscience," initiated by
the Civil Society Working Group on Gene Drives.
GeneWatch: Archives