Currently patients with family history of various cancers are genetically screened for them. In the future, genome sequencing may become part of the screening that babies undergo after they’re born. This raises a number of ethical issues:
- who owns your genetic information?
- who has access to it?
- where is it stored?
After a recent blog post, “Personalized Medicine in 3 – 5 Years?” I received questions from readers on how results of genetic testing might affect their insurance coverage. They expressed concern that if insurance companies know their genetic weaknesses, they will raise rates or deny coverage.
The good news is that in the US, it is illegal for health insurance companies use genetic information to set rates or deny coverage. It is also illegal for employers to use genetic information in their employment, promotion or compensation practices. The law passed in 2008 and took effect in 2009. The name of the law is the Genetic Information Nondiscrimination Act or GINA.
Under GINA, health insurers can not ask any questions about genetic testing as part of the application process, at renewal or as part of any health screening or wellness program, if there is a penalty or benefit associated with those questions.
Importantly, this includes any discussion of family history. If your health insurer or your employer questions you about whether your father smoked, had a heart attack or if your mother had breast cancer, they violate GINA.
GINA applies only to health insurers and employers. It does not apply to long-term care coverage or life insurance. This is because of something insurers call “adverse selection“.
An example of adverse selection – someone learns they are likely to die at an early age, then buys large amounts of life insurance to assure surviving family members’ security. The insurer, unaware of the high risk plan member, cannot adjust its pricing to the risk profile. This hurts the rest of the policyholders in that insurance pool whose rates will rise to fund higher claim payments.
When Your Insurer Can See Your Results
Be careful; there are circumstances when a health insurer can ask that an individual undergo genetic testing and share in the results.
Sometimes the choice of proper treatment depends on a patient’s genetic makeup. In that case, to decide whether the treatment is medically necessary and whether the insurer will pay for the treatment, genetic testing is needed.
If the patient refuses to take the test before taking the treatment, the insurer can refuse to pay the claim. However, the insurance company can only see the information needed to decide the proper treatment and payment.
The best advice is to discuss these issues in detail before being tested. Understand your options for sharing and storing this information. Talk with your doctor, the testing company and finally, discuss with your family.
If your insurer is requiring the test for medical appropriateness, understand what information they will see and get a written statement from the insurer that the request is permitted under GINA and that it will not affect your rates or coverage.
For more detailed information go to this link at The Genetics and Public Policy Center, Johns Hopkins University.
What’s your opinion? Should genetic information be shared with insurance companies? Should your employer have access to this information? Post a comment and share.
photo credit: Cave of Knowledge
- Can You Be Fired for Your Genes? (ideas.time.com)
- GINA Under the Microscope: Genetic Testing in Employment (laborlawposter.com)
- At a Personal Genetic Crossroads (pbs.org)
- Ten Unanswered Questions on Genetic Information (pbs.org)
- (Once Again) It Ain’t Necessarily So (patentdocs.org)
- TECHNOLOGY: First Bedside Genetic Test Could Prevent Heart Complications. “For some cardiac patien… (pjmedia.com)
- Four Ways Personalized Medicine will Change Doctor-Patient Relationship (tedkolota.com)
- What Is Your Genetic Profile? (drkennethorbeck.com)
- Genetic Discrimination Cases On The Rise | News in Psychology … (psychone.net)
Personalized Medicine Gains Traction
Since completion of the Human Genome Project in 2003, the promise of personalized medicine (PM) caused many to consider its effect on bio-science, pharma and healthcare delivery. Physicians contemplate a future in which patients enter their office equipped with symptoms and a list of the genetic variants they posses and questions about what they mean.
The problem hasn’t materialized because the cost of discovering and developing drugs customized to the needs of a sub-genetic group have been prohibitive. Today however, IT frameworks like Hadoop deploy massively powerful, inexpensive processing power. Now the huge genomic database becomes a more accessible resource to develop medications that are effective for targeted patient populations.
These new drugs offer improved cost-effectiveness over blockbuster drugs for conditions like high cholesterol or hypertension. Physicians will spend less time and money in trial and error to find which drugs work for which patients.
Disruption in Healthcare
In my last post, I raised the question, “Will Personalized Medicine have a disruptive influence on medical practice?” Those familiar with Christensen’s theory of disruptive innovation understand that market leaders focus resources on product development for advanced users who don’t care about cost. Often products contain features and benefits that don’t matter to most users. This leaves room for competitors to develop new technologies and business models to meet the needs of average consumers and “disrupt” the market leader’s business from the bottom up.
Healthcare is not like other businesses. The role of payers and policymakers as well as the interests of public health intervene and create barriers to natural market forces. These factors slow the rate of disruption. Yet there will be fundamental change in the way physicians and patients interact as PM gains traction.
Four ways PM will disrupt healthcare delivery
#1 Predictive, not reactive:
- Rather than waiting to treat symptoms of a disease that occur, physicians can predict which diseases a patient is susceptible to.
- The physician develops a personalized health plan to prevent or detect these diseases early.
- Patients will become a true partner in the delivery of healthcare, monitoring their progress and reporting results to their caregivers.
- Home testing may replace testing in the doctor’s office.
- Fewer office visits, less face time with the PCP is less expensive, but is it better medicine?
#2 More information on more treatment options:
- Physicians prepare to answer patients’ questions about new genetic tests and the treatments for their sub-group.
- Continuous access to up to date, peer-reviewed medical information will increase dramatically.
- As more options for care become available, will the patient’s trust in the sources of clinical information and outcomes begin to erode?
#3 New ethical and moral obligations:
- What is the physician’s role with patients on the moral and ethical questions surrounding access to genetic tests?
- If one family member wants genetic testing and another doesn’t and a serious disease potential becomes known, what is the physician’s obligation to inform?
#4 Physician’s role in decision to test:
- Should patients have their own testing done without supervision of a physician?
- Should tests be offered for genetic disorders for which no treatment is available?
- Who pays for development of testing and treatment for small sub-groups of patients?
What do you think? Will PM disrupt or enhance healthcare delivery?
- Genetic causes found in nearly 1 in 5 patients with dilated cardiomyopathy heart failure (eurekalert.org)
- DIYgenomics community computing health models (slideshare.net)
- Ex-Cleveland Clinic colleagues Topol, Nissen at odds on personalized medicine (medcitynews.com)
- Four Themes to Watch in Personalized Medicine (xconomy.com)
- Working with Healthcare Stakeholders towards Brain-Based Personalized Medicine (sharpbrains.com)
- The State of Personalized Medicine: The Role of Biomarkers (sharpbrains.com)