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)
The Hospital Stay Experience
Comedian Mel Brooks as The 2,000 year old man tells us what is was like as a patient in stone age hospitals. ”Hospitals ran on the same principles as today - the principles of people walking past you while you’re screaming and not caring. That same wonderful indifference to the sick and the dying. We invented that.”
Mel’s routine came to mind recently while talking with a physician friend who is a senior leader at a regional academic medical center. He said, “We deliver quality health outcomes, what we’re focused on is improving the patient experience.”
Many of us remember our hospital stays as mixed at best. Patient as prisoner, stoic caregivers, bland food, poor communication. Yet for many years patient satisfaction scores routinely topped 90%. Satisfaction surveys were usually filled-out at discharge, before the patient paid the bill. Patients, happy over their improved health, gave high scores on the survey.
Times have changed. Pressures to lower costs and improve outcomes intensify competition among hospitals. More employers offer tiered insurance plans which can cost less per month but charge the patient more to use hospitals with higher than average costs. Higher priced academic hospitals have to justify those prices to consumers. They want patients delighted with their hospital stay.
What Does “Patient Experience Mean?
The Gallup Management Journal reports hospitals are widely divided about what the “patient experience” means. For about a quarter of hospitals surveyed, it means excellent customer service – the hotel model. About one-third believe it means “patient-centered care”, which is more of a health outcomes model. The rest of the hospital executives in the survey gave answers somewhere between those two models.
The Centers for Medicare and Medicaid (CMS) created a nation-wide standardized patient satisfaction survey which represents the mid-point between the hotel and the outcome models. It’s called the CAHPS Hospital Survey. It measures how well doctors and nurses communicate with patients, cleanliness, pain management, quietness and discharge procedures on a 10 point scale. Consumers can see how hospitals compare to national averages in quarterly report published by CMS/CAHPS.
Hospitals which embrace patient-centered care don’t think the CAHPS survey goes far enough. They want patients to not only be delighted with the quality of service, but with their health as well. These hospitals work to redefine how care is delivered. It’s not easy. Current models of healthcare delivery often exclude patients and their families from an active role in treatment; they are episodic, not continuous. They focus on a specific problem, not the person as a whole.
With the help of consulting companies like Planetree, many hospitals are moving to the patient-centered care model. This requires them to rethink how they deliver many aspects of care, similar to Business Process Re-engineering (BPR). As with any fundamental change, hospital culture must change fundamentally. This is the difficult part and may take years to become real.
Happier and/or Healthier?
While there are many case studies which show effective implementations of patient-centered care models, the long-term effect of this change on health care quality and the overall health of the patient is unknown. Many question whether patient-centered care’s focus on delivering only what the patient needs and no more is just a cover for rationing care and lowering costs. If the patient is happier, but is not materially healthier, why go to all the trouble?
As one physician, commenting on an earlier blog in this series said,” The goal has always been to individualize the treatment to the patient but I fear economic pressures may influence this in another direction.”
Right or wrong, this is the road we are on.
How satisfied are you with your hospital’s quality of service? What do you think about patient-centered care? Please comment and share.
- Patient-Centered Care – We Aren’t Ready for It (healthecommunications.wordpress.com)
- Patient-Centered Care: Who Is Doing Your Surgery? (centerforhealthmediapolicy.com)
- In hospitals, a tradeoff between better clinical quality and a good patient experience (eurekalert.org)