J Michael Sean Onderick                                       Professor Friedman

Spring 2003                                                                        Legal Issues of the 21ST Century

 

“I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science.”[1]

 

“Every human being has between four and eight genetic defects; thus, we all have a serious stake in the outcome of legislative initiatives and policies.” [2]

 

LEGAL RESEARCH—OTHER BIOTECH-GENETIC SCREENING IN HEALTHCARE AND THE WORKPLACE

 

Genetic screening is potentially one of the most controversial issues of our time. Genetic screening can be seen as a two-edged sword, holding out tremendous promise to make life better and healthier for all of us, while at the same time carrying with it the tremendous threat of employment and healthcare discrimination of the most invidious kind.[3] According to the National Human Genome Research Institute’s executive summary on Genetic Information and Health Insurance Report of the Task on Genetic Information and Insurance: “One of the ironies in the current health care coverage crisis is that developing more accurate biomedical information could make things worse rather than better”. [4] Genetic screening, however, is nothing new.   

 

HISTORICAL BACKGROUND

 

Human beings are comprised of millions of cells that perform a variety of individualized functions, such as growing hair and fighting off disease. [5] Genetics involves the study of how organisms pass traits of anatomy, physiology, and behavior from generation to generation through descendants.  [6]As Genetics has evolved from the nineteenth century studies of Gregor Mendel, to the discoveries of James Watson and Francis Crick in the 1950s, and the recent explosion of genetic knowledge gained through the Human Genome Project  in the 1990s, it has expanded from a little known or understood topic to a major and frequently controversial field of scientific discovery. [7]

 

GENETIC SCREENING-BENEFITS

Even the most virulent critics of genetic discrimination agree that genetic screening has many potential benefits.[8] Among these benefits are the early detection of disease and/or the genetic predisposition to disease and corresponding ability to apply appropriate prophylactic or curative measures. [9]  For instance, it has been estimated that within ten years, a doctor could use a DNA chip, similar to a computer chip, to assertane whether a per son's genes put them at risk for disease, or, if a disease has already developed, determine the severity of the ailment and which method of treatment best suits the individual's case. [10] An example of this can be found in the screening of newborns for sickle cell anemia. A percentage of newborns with sickle cell anemia are at risk of developing deadly infections during their first year of life. If these children are identified early prophylactic antibiotics can greatly reduce the risk of these infants developing life threatening infections. [11]These and other genetic screening technologies may have an extremely positive effect on human health and quality of life. However, there are many potential downsides to genetic screening as well.

 

GENETIC SCREENING PONTENTIAL DOWNSIDES

While even its opponents of genetic discrimination grant that genetic screening has some very beneficial uses, they are quick to point out the frightening potential for abuse genetic screening carries with it, especially in connection to the workplace and healthcare insurance.

 

In the workplace, genetic discrimination opponents point out that genetic screening has been applied as early as 1938 in efforts to sort out workers according to their susceptibility to occupational hazards. [12] Furthermore, studies indicate that some of those who participated in workplace screening programs for sickle cell anemia during the 1970’s were discriminated against at work and from insurance companies that raised their premiums. [13] Moreover, it was not until that the Air Force Academy reversed its policy of excluding blacks with sickle cell trait (which only revealed a possible predisposition to developing full blown sickle cell anemia),  based on the belief that a low-oxygen environment could cause the carrier to experience a sickling episode. [14]

 

In respect to healthcare, opponents of genetic can point to the fact that fully 22% of those people whose families were at risk for genetic illness believed either they or their family members had been denied insurance based on genetic predisposition.[15]

 

Fears concerning genetic testing and genetic information based discrimination is bolstered by the fact that insurers do have rational economic reasons for either excluding high-risk individuals from coverage or at least charging them higher premiums.[16] This is because people that learn that they are predisposed to a genetic disease are more likely to purchase maximum insurance coverage. [17]On the whole, these people are more much more likely to become ill and,  to submit insurance claims that exceed the premiums they have paid. [18] Furthermore, there are those in the insurance industry who argue that genetic discrimination based upon genetic testing should be allowed, reasoning that once the genetic testing becomes more readily available the effects of the ensuing adverse selection spiral would be less coverage for consumers and perhaps bankruptcy of insurers. [19] Finally, while the opponents of genetic discrimination are aware of the numerous laws that seek to prohibit genetic discrimination in respect to healthcare, especially those laws that prohibit the use of genetic information to deny access to health care plans, they don’t put much stock in them.  In fact, they point to underlying profit motive, especially in HMO’s as an incentive for doctors to use access to genetic information to maximize payments from the healthcare plan by minimizing appropriate treatment. [20] 

 

PUBLIC POLICY, LEGISLATION, AND CASE LAW

 

The potentially negative aspects of genetic screening have resulting in a wide ranging effort to combat genetic screenings’ negative potentialities while augmenting its potential benefits. To that end, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) , the first federal law to directly address genetic information prohibits health insurance discrimination based on any "health status-related factor," including genetic information, for group health plans, usually those with more than 50 individuals.[21]

 

Specifically, HIPAA,  in respect to health insurance in the group market does:

1)Prohibit excluding an individual from group coverage because of past or present medical problems, including genetic information;

 2) Prohibit charging a higher premium to an individual than to others in the group;

 3) Limit exclusions in group health plans for pre-existing conditions to 12 months, and prohibit such exclusions if the individual has been previously covered for that condition for 12 months or more; and

4) State explicitly that genetic information in the absence of a current diagnosis of illness shall not be considered a preexisting condition.  [22]

 

HIPAA does not however,

1) Prohibit the use of genetic information as a basis for charging a group more for health insurance;

2) Limit the collection of genetic information by insurers and prohibit insurers from requiring an individual to take a genetic test;

3) Limit the disclosure of genetic information by insurers; or

4) Apply to individual health insurers except if covered by the portability provision.[23]

 

 In addition to this, laws in 34 states prohibit the use of genetic information for risk selection and risk classification purposes.[24] Moreover, Arizona, Vermont, and West Virginia require actuarial justification for the use of genetic information, while Texas bans use of genetic information in group health plans, and Alabama prohibits discrimination based upon predisposition to cancer.[25]

 

In addition to this, President George W. Bush has forcefully indicated that he wants the United States to outlaw discrimination based on genetic testing.  [26]  On February 8, 2000, the President issued Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information. [27] In addition to this EEOC Commissioner Paul Steven Miller has taken the position that: "The Commission takes the position that basing employment decisions on genetic testing violates the ADA [Americans with Disabilities Act]. In particular, employers may only require employees to submit to any medical examination if those examinations are job related and consistent with business necessity. Any test which purports to predict future disabilities, whether or not it is accurate, is unlikely to be relevant to the employee's present ability to perform his or her job."[28] 

 

CONCLUSION

 

The increased availability of genetic screening that is sure to develop in the near future is a double edged sword. On one edge is a healing scalpel, with the ability to detect, and possibly deflect, the ravages of harmful diseases before they can destroy their victim, the other edge is like a sword of Damocles, hanging over all of us, with the potential to render our concept of privacy obsolete, our healthcare system ineffective, and significantly retard the inroads we have made towards ending workplace discrimination. The sword, is in our hands, let us hope we wield it capably. 



[1] Jendusa, Jennifer. Notes and Comments: Pandora’s Box Exposed: Untangling the Web of the Double Helix in Light of Insurance and Managed Care. 49 DePaul L. Rev. 161 quoting Gattaca (Columbia Pictures 1997) pg.1.

[2] Id. at 11. Quoting O’hara, Susan, The Genetic Use of Testing in the Health Care Industry: The Creation of a “Biological Underclass.”, 22 Sw. U.L. Rev. 1211, 1224 (1993). 

[3] National Institutes of Health-Department of Energy, ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace: Implications for Employment, Insurance and Privacy, (1996) http//www.genome.gov/ ; Congress of the United States Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace. (1990) pg. 41.

http://www.wws.princeton.edu/cgi-bin/byteserv.prl/~ota/disk2/1990/9020/902005.PDF

[4] National Human Genome Research Institute-NIH-DOE Working Group on Ethical, Legal and Social Implications of Human Genome Research, Genetic Information and Health Insurance Report of the Task on Genetic Information and Insurance, ELSI Research Program (1993). http//www.genome.gov/

[5] Jendusa, Jennifer, Notes and Comments: Pandora’s Box Exposed: Untangling thE Web of the Double Helix in Light of Insurance and Managed Care. 49 DePaul L. Rev. 161  Pg. 10.

[6] Id.

[7] Id.

[8]Jendusa, Jennifer. Notes and Comments: Pandora’s Box Exposed: Untangling the Web of the Double Helix in Light of Insurance and Managed Care. 49 DePaul L. Rev. 161, pg.1  quoting Gattaca (Columbia Pictures 1997) pg.2.; Congress of the United States Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace. (1990) pp. 41-43. 

[9] National Human Genome Research Institute-NIH-DOE Working Group on Ethical, Legal and Social Implications of Human Genome Research, Genetic Information and Health Insurance Report of the Task on Genetic Information and Insurance, ELSI Research Program (1993). http//www.genome.gov/

 

[10] Jendusa, Jennifer. Notes and Comments: Pandora’s Box Exposed: Untangling the Web of the Double Helix in Light of Insurance and Managed Care. 49 DePaul L. Rev. 161 applying Ingrid Wickelgren, Gene Readers: Personal Gene Chips Reveal Your Risk for Deadly Diseases - and Tell You How to Fight Back, Popular Sci, Nov. 1998, pp. 57-58.  

[11] Congress of the United States Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace. (1990) pg. 43.

http://www.wws.princeton.edu/cgi-bin/byteserv.prl/~ota/disk2/1990/9020/902005.PDF

 

[12] Id. at 41.

[13] Id. at 42.

[14] Id. at 42-43.

[15] Rothstein, Mark and Hoffman, Sharona,  Article: Genetic Testing, Genetic Medicine, and Managed Care, 34 Wake Forest L. Rev. 849, pg. 7.

[16] Id.

[17] Id.

[18] Id.

[19] Id. ; Peteron, Cartsen A., New Twist to an Old Injustice n1-Genetic Discrimination and Medicare Reform, 36 Idaho L. Rev. 345, Pg. 4.

[20] Id. at 13.

[21] See National Humane Genome Research Institute Health Insurance and Employment Discrimination

Issue Update (2001) @ http://www.genome.gov/10002347; National Conference of State Legislatures, State Genetic Nondiscrimination in Health Insurance, (2002) @ http://www.ncsl.org/programs/health/genetics/ndishlth.htm.

[22] Id.

[23] Id.

[24] See National Conference of State Legislatures, State Genetic Nondiscrimination in Health Insurance, (2002) @ http://www.ncsl.org/programs/health/genetics/ndishlth.htm.

[25] See National Conference of State Legislatures, State Genetic Nondiscrimination in Health Insurance, (2002) @ http://www.ncsl.org/programs/health/genetics/ndishlth.htm.

[26] See CBS New.Com, Bush: Outlaw Genetic Discrimination, (2001) @ http://www.cbsnews.com/stories/2001/06/23/national/main298082.shtml

[27] See National Humane Genome Research Institute, Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information, @ http://www.genome.gov/10002084  

[28] See PrivacyFoundation, Legal Database, Summary EEOC v. Burlington Northern Santa Fe Railroad, (2001) @ http://www.privacyfoundation.org/legal/case/show.asp?id=25&t=2