The Sherpa's Plan: Fraudulent Acts for 200 Bucks. Enter the Nurse Geneticist!!

There is a storm coming. The way clinical genetics services are delivered in academic centers needs to change. Trying to make money through incident services could costs counselors and genetics departments everywhere.

Billing through an extender leverages the already busy clinician and helps us see many patients.

When a physician needs to bill for an extender they pick an NP or a PA. If they pick a CGC and never see the patient, bill for a clinical consult, and have someone forge their name, then they could be in a little bit of trouble. Especially with Medicare.....

Yet that is precisely what is happening in a majority of medical centers in the country. In my unscientific poll, 15 of the top 30 institutions who host cancer genetics clinics are doing this exact thing. I won't point fingers anywhere, but Friends....this is insurance fraud.

How is that so?

Well, according to the CPT code 99245, which 20 of the top 30 do code for and bill insurance for must include....

Outpatient Consultation: CPT Code 99245
Key Components (All 3 meet or exceed requirements)
E/M Comprehensive History
E/M Comprehensive Exam
E/M High Complexity Medical Decision
Problem Severity
E/M Moderate Severity Problem
E/M High Severity Problem
Physician Time: 80 minutes

When I asked several patients referred and seen at several cancer genetics clinics in New England, only 10% said they were seen by the medical director of the clinic. 20% think they were seen by a doctor, but upon review it was a very disappointing 12% that ever were seen by an MD. Yet, a quick review of their EOBs stated that they received a 99245......

That is called insurance fraud in many instances. I wonder what the insurers would say if this cat were outta the bag?

This all could be solved if:

1. The physician saw the patient and did the majority of the work

2. A physician extender who can perform a physical exam does the majority of the work

3. They don't bill insurance and take only fee for service

4. They don't bill for a 99245 and instead use the genetic counseling CPT code 96040 with HCPCS S0265: Genetic counseling, under physician supervision, each 15 minutes

Why isn't this happening? Because in a recent AJHG review . ....

Average reimbursement for 96040 was $53.87.

In the small number of instances where multiple submissions of 96040 were made because of a prolonged GC visit, payment for each submission was the same. Mean reimbursement for other E&M services were:

99241-$67.79,

99242-$113.17,

99243-$146.25,

99244-$243.68,

99245-$249.38.....(Man, my attorney makes 200 USD more per hour and he doesn't do nearly as much for my health!)

Willing to commit Insurance Fraud for 200 bucks per case? A resounding Yes!

My Friends, this is a non-sustainable situation. As soon as some insurers get wind of this (Trust me they already have) you will find fines and lawsuits galore. But I have a solution, the answer.....Nurse Geneticists. You see, nurses can be billed as physician extenders, legally. In some states doing this for CGCs is allowed....but that may change, given Medicare's reluctance.

“Incident to” billing enables certain categories of non-physician health care providers to bill through a supervising physician. Medicare permits this type of billing for the following non-physician practitioners: Clinical Psychologists, Physician Assistants, Nurse Practitioners, Clinical Nurse Specialists, Nurse Midwives, and Certified Registered Nurse Anesthetists. Genetic Counselors are not included most of the time.

Nurses can perform exams....and NPs can do this on their own. PAs can also bill through physicians. This enables you to bill at a sustainable rate for services.

How can you help us accelerate this movement? Call your insurer. Demand to be seen by a physician or physician extender if you were going to be billed for a 99245. How would you know? Check your EOB (explanation of benefits). My geneticist friends will be having strokes now. Why? They are too busy in the lab or writing grant proposals to see patients.

"Especially the "Bread and Butter" BRCAs that the counselors see" unquote. Personally, I find it insulting to counselors to talk that way. They deserve clinical counterparts to collaborate with them. They are not your workhorse!

Secondly, there are many patients out there who could use a good physical exam to enhance their cancer work up. Why isn't this getting done? Because Clinical Genetics Departments sit inside basic science departments and the focus is on discovery. Not clinical care....why? I think I just showed you the CPT reason why. 250 a patient? I charge 750 per visit just to stay afloat!

Why should you demand this service? It will put stress on the broken system. To repair that system, we must first rebuild the foundation.

The Genetics Education Program for Nurses at Cincinatti Childrens is doing just that. Nurses are the foundation of great clinical care. Why shouldn't they be a part of Genomic Medicine?

From their site:

The Cincinnati Children's Hospital Medical Center's Genetics Program for Nursing Faculty (GPNF) was a multifaceted genetics educational program for nursing faculty. The GPNF was made possible through funding from the Ethical, Legal, and Social Implications Research Program of the National Human Genome Research Institute at the National Institutes of Health and the Division of Nursing, Health Resources and Services Administration.
The GPNF highly acclaimed offerings consisted of:

Seven annual on-site Genetics Summer Institutes (GSIs)
Web-Based Genetics Institute (WBGI)
Participant follow-up, educational support, and networking opportunities
A two-day genetics update workshop offered every two years

Nurses have existed on the fringe in this field. I am certain their day is coming. ISONG does too.

What is ISONG? The International Society of Nurses in Genetics. They are committed to working with genetic counselors. I think this is the right way to go. Unfortunately, many departments view one or the other as an extra cost. That is, until now. You see, if the departments can get away with 99245 without physician exam, then they won't staff appropriately. If they don't have to staff appropriately, they never get the collaboration which is needed here. They are too short sighted to see......

The Sherpa Says:

Legal loopholes may let your department survive with this "billing scheme" for now. But it will change very soon and someone will get fined or punished. I hope your academic center is ready to truly support the clinical department.

Translated yet???

I am posting in response to Drew at ThinkGene. He says no one will follow mandates unless they have the history to understand those rules. To lay some background for why medical researchers have policies, rather than gunsling it out I will give some background. From HHS.....

The modern story of human subjects protections begins with the Nuremberg Code, developed for the Nuremberg Military Tribunal as standards by which to judge the human experimentation conducted by the Nazis. The Code captures many of what are now taken to be the basic principles governing the ethical conduct of research involving human subjects.

In case you may have not learned in school or just forgot this lovely wikipedia article will refresh your memory. So will this list:

1 Experiments
1.1 Experiments on twins
1.2 Freezing experiments
1.3 Malaria experiments
1.4 Mustard gas experiments
1.5 Sulfonamide experiments
1.6 Sea water experiments
1.7 Sterilization experiments
1.8 Experiments with poison
1.9 Incendiary bomb experiments
1.10 High altitude experiments

The first provision of the Code states that "the voluntary consent of the human subject is absolutely essential."

Freely given consent to participation in research is thus the cornerstone of ethical experimentation involving human subjects.

The Code goes on to provide the details implied by such a requirement: capacity to consent, freedom from coercion, and comprehension of the risks and benefits involved. Other provisions require the minimization of risk and harm, a favorable risk/benefit ratio, qualified investigators using appropriate research designs, and freedom for the subject to withdraw at any time.

Now 23andMe is not exposing patients to mustard gas or mutilating genitals....But the principles exist not just for unethical research, but for ethical research too!.

From Wired Magazine, a quote from Anne Wojcicki regarding her Gene Journal and risk calculator"A lot of this is unknown. It's totally experimental," Wojcicki told me a few weeks before the science board meeting. "No one has looked at all eight diabetes markers together. They've all been identified individually, but they don't know exactly how they work together. So we've tried to make that clear."To crunch these numbers and determine one person's risk factor, 23andMe has opted to multiply the risks together. But a competing school of thought argues for adding the risk from SNP to SNP. The two approaches can result in wildly different tallies.

Welcome to the first Google driven experiment in genetics, paid for by the customers......Unfortunately that poor author from the NYT demonstrated her clear lack of that understanding. And she is a learned journalist, what's to happen to the layperson who has never had any education in genetics/science?

IRBs were formed to protect research subjects. Why could Dr George Church only get a select few for his first personal genome project? The IRB deemed laypeople unable to give informed consent. How did 23andMe end around the IRB?

23andME "Genetics By Business"
The Mission? Mission Statement23andMe's mission is to be the world's trusted source of personal genetic information

I want to over IRBs history a little more. Because, Trust is a very important word.

In July of 1974, the passage of the National Research Act established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Commission met from 1974 to 1978. In keeping with its charge, the Commission issued reports and recommendations identifying the basic ethical principles that should underlie the conduct of biomedical and behavioral research involving human subjects and recommending guidelines to ensure that research is conducted in accordance with those principles.

The Commission's report setting forth the basic ethical principles that should underlie the conduct of biomedical and behavioral research involving human subjects is titled The Belmont Report

The Report, named after the Belmont Conference Center at the Smithsonian Institution where the discussions which resulted in its formulation were begun, sets forth the basic ethical principles underlying the acceptable conduct of research involving human subjects. Those principles, respect for persons, beneficence, and justice, are now accepted as the three quintessential requirements for the ethical conduct of research involving human subjects.

While recognizing that the distinction between research and therapy is often blurred, practice is described as "interventions that are designed solely to enhance the well-being of an individual patient or client and that have a reasonable expectation of success. The purpose of medical or behavioral practice is to provide diagnosis, preventive treatment, or therapy to particular individuals."

The Commission distinguishes research as designat[ing] an activity designed to test an hypothesis, permit conclusions to be drawn, and thereby to develop or contribute to generalizable knowledge (expressed, for example, in theories, principles, and statements of relationships). Research is usually described in a formal protocol that sets forth an objective and a set of procedures designed to reach that objective.

"The Report recognizes that "experimental" procedures do not necessarily constitute research, and that research and practice may occur simultaneously. It suggests that the safety and effectiveness of such "experimental" procedures should be investigated early, and

that institutional oversight mechanisms, such as medical practice committees (exist).

So this is why I have a trust issue. Drew points this out at ThinkGene today.

If the Fox is watching the Henhouse.......how can we have significant trust? Just like the senators getting campaign donations by Freddie and Fannie.....this reeks!

The Sherpa Says: Since 23andME is not practicing genomic medicine, it must be researching genomic medicine. So according to the Belmot Report and Nuremberg code, their "subjects" should be able to withdraw from research and have the benefit of an IRB. As for sample removal......it should be justified which tests will be run and patients have the opportunity to refuse or be reconsented.....That's how you win my trust....

Long overdue, Gene Sherpas quoted twice in journal!

After a week from hell I am back. I am sad that I missed a week's worth of cancer genetics patients, but they wouldn't have found me very useful at the time!

As I recover, I wanted to point you in the direction of 2 articles which quote This lovely blog, Gene Sherpas! Yes that's right, peer reviewed journal articles quoting the Sherpa....ok, well one was an article I wrote, so I guess that doesn't count! But Li Hui Xu at the great Ohio State University College of Medicine's Center for Personalized Healthcare quotes me....I have to tell ya, I was flattered!

"Steven Murphy, the blogger of the Gene Sherpa and Clinical Genetics fellow at Yale University (CT,USA) advises institutions to abandon the 'prize' for publication, which is so highly valued in academia, but prevents the early exchange of information and resources. Instead, Murphy says, institutions needs to nurture inter-institutional collaboration "In fact, I would say we should prize how many universities were involved in every study!""

Wow! Thank you for reading this blog. I am honored to have it quoted in a peer reviewed journal such as Personalized Medicine! I know the weekend is coming up.

But I will be working on a presentation I am going to give at the NSGC. The topic, where do genetic counselors fit in personalized healthcare. Here's a sneak peek.

1. Genetic counselors: are trained in genetic counseling and have 2 years post-baccaluareate training. They take their certification exam once without needing to recertify like MDs! They do have one or 2 courses in clinical medicine where they "discuss medicine in a workshop format" They do take family and medical histories though. I have even seen a few try to do physical exams, even though they were never formally instructed in this. They do require Continuing education though, which is very nice. All in all that is less than 1 year of clinical training prior to running their own genetic counseling division under the loose supervision of a doctor or doing SNP scan counseling. They do have to have 50 cases though.....Number? Approximately 2000 or so.

2. Nurse practitioners: are trained in clinical nursing and have had 2 years of post baccalaureate training. But first had attained 4 year degrees in a clinical setting (i.e. dosing medications, caring for patients). In addition, they too have a certification exam which they do not need to recertify. But in addition, require continuing education. Plus did I mention that they also did 4 years of clinical training PRIOR to their master's degree? NPs conduct physical exams, diagnose and treat illnesses, order and interpret tests, counsel on preventive health care, assist in surgery, and write prescriptions too.

All in all that is 4-6 years of clinical training prior to being under the supervision of a doctor. A little more than 50 cases I imagine. Number 120,000

3. Physicians' Assistants: are trained in a 4 year bachelors degree and then go on to 2 years of intense basic medical science and clinical training. When they are done PAs conduct physical exams, diagnose and treat illnesses, order and interpret tests, counsel on preventive health care, assist in surgery, and write prescriptions. They also are required to recertify every 6 years and take CMEs too. Most PA programs even require some sort of healthcare experience prior to going to PA school.

All in all that is 2 years of clinical training prior to being under the supervision of a doctor. Still more than 50 cases......Number? 43,000 or so 4.

Medical Geneticist: Take 4 years of bachelors, often in basic medical science. Then go on to 4 years of medical school. Then they go on to 3 years (at least) of medical residency where the diagnose, treat, dose medications, perform physical exams, take calls.
AND THEN they go on to 2 more years of training in fellowship, diagnosing and treating genetic medical disease, doing research, taking calls. All in all that is 9 years of clinical training under their belts prior to being on their own. Plus they have 150 cases and that pesky 9 years of training.

Number? 700 or so.

Why do I mention this? Because the public needs to know what they are getting with each type of consultation.

And I do this to make the point that Certified Genetic Counselors will struggle to find their place in the new fields of Genomic Medicine, unless they go back and truly train in clinical medicine.

The genomic nurse's are clamoring to take your positions. Well maybe not, but alot of CGCs don't even speak the clinical language very well. In order to take accurate medical and family histories, they need to know the genetic implications of sudden death, stroke, heart attack, coumadin metabolism, protonix efficacy, alzheimer's disease, COPD, I could go on and on.

But if they never saw it and talked about it, how could we ever ask them to learn this stuff through Osmosis or "Clinical Workshop"????? They can learn it by working with doctors....

To be a part of the team in Genomic Medicine, a counselor needs to decide, do I want to be a licensed healthcare practitioner? Or an educator/counselor? If the answer is the former, I humbly suggest 2 years of clinical education maybe by apprenticeship. If the answer is the latter, I would not give medical advice/education without having it ok'd by my supervising physician. Because if you were scratching my signature on that insurance form, I would be damn sure you were giving proper medical advice.

Warning This is an Extreme example!

Not all counselors are like this one. Just the overconfident ones are!

Why do I say this? Because, I have seen CGCs tell patients that if they have their ovaries out prior to menopause that it is ok to take hormone replacement therapy.

But NEVER, EVER tell them the risks of HRT, including stroke!!!!

In fact, I saw a CGC take a family history loaded with stroke, yet tell the patient straight faced she could go on HRT.

When I questioned her where she heard that, she said: "Well, or lead counselor has some papers on it." I told her that I was taught, WHI was stopped b/c the Estrogen Alone Arm increased risk for stroke compared to placebo....she said, well I have a compilation I can give you.

What she pulled out was representative of her knowledge base. It was 4 sheets of paper explaining how HRT in premenopausal BRCA carriers don't have increased risk of getting breast cancer......There was nothing about stroke in it at all.

This is the type of thing that doesn't surprise me. Did a CGC ever learn about stroke? NO. Did they ever learn about sticky platelets in the face of estrogen? NO. Did they ever learn about platelet glycoprotein receptors? Likely Not? So why would I expect them to counsel on the risk of HRT?

They don't speak the language.

This is precisely why they need to be collaborating with physicians while delivering medical counseling. But that's not what's happening.

Ask any Cancer counselor and they will tell you about the tremendous amount of insurance fraud that is going on...if they dare....

But I am here to tell you about the tremendous amount of significant medical misinformation that is being conveyed to the detriment of the patient. It is sad and must stop. No offense to my excellent CGC colleagues who recognize their limitations.

But to the rest of you, stop practicing medicine without the medical clinicians. Demand that they work with you.

So to answer the question, where do CGCs fit in? As the informer of disease risk for diseases they are trained to understand and know, and not to give medical/medicinal advice unsupervised.

That being said, you can learn about a field you weren't trained in, but you should stick with the doctor, or physician approved guidance.

Some counselors will learn more than others, but they still should have physician supervision........If you want to do more......go back to school.........

The Sherpa Says: These are harsh words. I think CGCs are fantastic as a whole. But we have to be realistic, we could do much better training just 3 percent of the NPs or 5 percent of the PAs and be able to carry out Genomic Medicine efficiently. It would take 100 percent of CGCs to go back to school for 2 years to carry this out. It is just not reasonable to expect them to do that......plain and simple. To all my CGC friends, I still love you. I hope you aren't pissed at me. If you are, then send me an email. I am sure this will make the SIG.

Sherpa's Plan: How you can join us!

I am happy to report that our Foundation website is now up. We are accepting members and plan to use this tool to hold the press accountable. Visit us at HelixGene. Why is this an integral part of the Sherpa Plan? Because physicians are too busy to get their genomic education from anywhere other than the TV or Newspapers or Newsweek.

Most physicians underestimate the utility of genomics. Most probably never learned about it in medical school. How can we deliver adequate education through mass media??? By vetting it and holding it to medical education standards. Sounds pretty harsh huh?

These times call for harsh measures. Plain and Simple.

From the Foundation's Site

HelixGene was scrambled over the weekend of September 19th 2008 as an emergency forum of genomic medical experts to address significant medical misinformation in the New York Times regarding the G2019S mutation of the LRRK2 gene.

HelixGene's still under construction, but the relevant information regarding this emergency has been published:

Genomic Press Release for G2019S => LRRK2 => Parkinson's Disease

A : Too : LRRK2
F : New York Times : Google Co-Founder Has Genetic Code Linked to Parkinson's

See

About HelixGene Foundation for more information

I hope this first issue spurs you to action. It certainly has done that with us!

Happy Holidays!

-Steve

Sherpa's Plan: Lack of Qualified Education Sources

I have received great response to our HelixGene Foundation. We are quickly building our community. It is so heartening to see everyone support this effort. It is frankly, breath taking!

Today I will be headed to a wonderful company. They are called Cine-Med. They are joining forces with the Sherpa to create Genomic CMEs. We have some great ones that are fast approaching launch.

My mentor told me that I am doing to much. But I have to tell you, I am not doing enough. I need your help. Help empower physicians to learn and practice Genomic Medicine!

Remember what I said about NCHPEG.....only 6 of 100 primary care physicians had ever heard of them. Instead they would rely on the Sunday NY Times. There has to be a better way! Either we launch a multi-million dollar awareness campaign for NCHPEG or we partner with someone who already has that recognition. I am working on that one too!

The Sherpa Says:
The NYT article on Sergey was the call to action! We need to act by uniting and guiding this field up the mountain!

Overselling Genomics, Sherpa Plan part 1

Yes finally, at last I am going to release my Sherpa Plan!

Thank you to all who have helped form this unique set of operating instructions to help rescue the promise of personalized medicine.

Now to Problem Number One....

Lack of Public and Physician Education by qualified sources.

How many people have heard of NCHPEG? I have, they are the National Coalition for Healthcare Professional Education in Genetics and they are a fantastic resource. But.

Well, my team took a poll (non-scientific) of 100 primary care physicians........how many do you think have heard of this organization............6 and they all had spoken with a geneticist in the last 2 months. In other surveys, physicians state that they rely on the same media that patients do to receive information about genetics. That's just not right!

Friends......we have a big problem when the people who are supposed to be implementing genetics get their information from an unreliable news media. Why are they unreliable? They like everyone else are expected to do more with less.....thus fact checking has become a thing of the past........

So therefore, if physicians are going to use the Sunday Times as their information, then we are going to fact check it ourselves......

Together with Drew Y, we are creating a community to fact check genetics reporting. It is called HelixGene Foundation......Thursday we will have sent an email to over 1000 genetics professionals inviting them to join our community.....

Attention Media and Public Relations! You are now forewarned.....We will keep grades on all of you and post them so that the public and physicians who are reading your articles are given the courtesy of Peer Review!

Want to join our community? You need to verify your PhD, MD, or CGC credentials and then we will sign you up.

The Sherpa Says: If we can control the accuracy of information, we will avoid overselling genomics. Why is this important? To prevent articles, like the one of Dr Khoury in the NEJM essentially bashing SNP scans. The problem? PMDs viewed that article as marginalizing the whole field of personalized medicine. Not just the SNP scan! Trust me Dr Khoury, we need more than a treadmill to carry out personalized medicine.

LRRK2, NYT, Trust and Sergey!

What I find interesting is how a SNP finding and a blogger can set the press a fire.....especially when the blogger is a junior member of the billionaire's club.


In this case I am speaking of course about Sergey Brin who recently published a blog post on his risk for Parkinson Disease. It helps understand why his wife launched 23andWe......

This research would have great potential if the Company 23andMe would obey the "rules and ethics" of common human research by allowing patients to remove their samples from 23andMe's database if tehy so chose.....and more importantly, consenting a patient when the sample (which 23andMe would now own) would be tested for other things...

23andMe's mission is to be the world's trusted source of personal genetic information

They have a long way to go........

That being said....I think we should talk about LRRK2 and what it means for Sergey and others who carry it. From Sergey

It is clear that I have a markedly higher chance of developing Parkinson's in my lifetime than the average person. In fact, it is somewhere between 20 percent to 80 percent, depending on the study and how you measure," Brin said.

That is 20 percent to 80 percent higher than the average risk......Not 80 percent likelihood to develop Parkinson Disease. That 80% risk is the case for BRCA carriers in breast cancer, but not this LRRK2! This was a statement on his post which some people may get confused by...so don't.

The New York Times reporter did

Mr. Brin, who made the announcement on a blog, says he does not have the disease and that the exact implications of the discovery are not clear. Studies show that his likelihood of contracting Parkinson’s disease in his lifetime may be 20 percent to 80 percent, Mr. Brin said.

Parkinson Disease affects approximately 1% of the population by age 65% and 4 to 5% by age 85 years. Therefore the lifetime risk is 2-5%. So a 1.2 to 2.1 Odds ratio would be 4% to 10% roughly. Not 80%!

There are several genes that have been linked to PD, including alpha synuclein, PARKN, PINK1, DJ1 which have all been linked to familial PD. LRRK2 is a realtive newcomer to the field with good publications starting in 2005. For reference the first BRCA publications were in 1994. It took us 10 years to really be able to fully understand and explain what the risks are. We still have problems with this though.

There are several misconceptions about BRCA as there are for LRRK2....worse yet, counseling for LRRK2 can be confusing. Which is why perhaps

Because there are only a small number of genes which are known to have a very substantial effect on health (e.g. 10 times the average risk)
I felt the possibility of discovering something very important to my health was just a hypothetical exercise. So, when my wife asked me to look up G2019S in my raw data (23andMe scientists had had the forethought to include it on their chip), I viewed it mostly as entertainment.....

LRRK2 is not one those genes that increases your risk by tenfold...

LRRK2 mutation accounts for 5 to 6% of familial PD and 1-2% of sporadic PD. Not exactly what I would call useful for a screening test. Mind you this is given for North Americans and Europeans.

These numbers however do change for a few ethnicities including North African Arabs, Ashkenzi Jews where it goes up to 29-37% of familial cases and 7-14% in sporadic....some studies say as high as 41% in sporadics, but the high sporadic data is not replicated.

What is familial PD? Well, at least one first degree relative must carry a diagnosis of PD.

I am not certain of Sergey's Ancestry.....perhaps he is African Arab or Ashkenazi Jewish? That might put his likelihood of having a mutation in LRRK2 higher.....

Interestingly in the largest study of Ashkenaim with PD to date the odds ratio to develop PD was 5.77 which is very high and fairly significant. Unfortunately, these data ONLY apply to Ashkenazi Jews from Israel as this was the population studied.

So don't go thinking it is that high for everyone. In this study, the Odds Ratio for developing PD in Ashkenazi patients with the LRRK2 G2019S mutation was 5.7 (CI 2.8 to 11.7). It is increases when you match age and sex to 8.6. Which has us thinking perhaps this is a sex effect? Not that sex, you perv!

What is the percent of unaffected carriers in the general population of Ashkenazi? 2.2%

That is a scary stat for my Jewish friends. That means this mutation is not nearly as common in the unaffected Ashkenazi Jewish population. This should be only interpreted for this Ethnicity! Not for Europeans or for Americans who do not have Ashkenazi ancestry!!

It was crazy that none of the other mutations in LRRK2 were detected in this Ashkenazi cohort. That certainly speaks for a founder effect!! Similar to the founder mutations in BRCA1/2

In dissecting out thet data a little more we see that the G2019S was found more commonly in Women and in Familial Cases for the Ashkenazi population.

So, I hope that helps. These data and perhaps the numbers Sergey quoted were likely those for Ashkenazi Jews. So if you are Tom Smith from Nebraska, chances are that the LRRK2 data you now could afford to get are not so dire. And even if you are Jewish, the penetrance of this mutation is 24 to 85%

Sergey's post was great and highlights a special issue. Ethnicity and its role in disease. We cannot apply one ethnic groups data to another. A study done on the Chinese does not apply to Northern Europeans. This is why SNP data can mislead and scare.

Here's the big question, when you found out you might get Parkinson Disease Sergey, were you alone? Would have liked to have someone there? Would you have liked to talk with a geneticist? Or was it like Joanna Mountain said to a friend of mine "Aww, Come on, this testing is just for fun"

The Sherpa Says:

At Helix Health of Connecticut, patients are seen that have family history of Parkinson Disease. I believe that all asymptomatic testing of this nature can be confusing and requires appropriately trained consultation....plain and simple. What if Sergey didn't have billions to through at this disease in hopes of a cure and to give him hope? He might be hopeless. In that case he might have even contemplated suicide......in the privacy of his own CPU......