Tag Archives: genetic counseling education

Guest Post: Breaking the Glass Ceiling

By HEATHER HAMPEL and DAWN LANEY

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Do you hear that sound?  It is the sound of hundreds of genetic counselors bumping their heads into the glass ceiling that our Master’s degrees can cause, particularly in academia.

For Heather, her first experience with this occurred within 2 years of graduating when she was working on a research study in colon cancer genetics.  Their collaborator did not believe she should be listed as a co-author simply because she did not have an MD or PhD.  Her boss fought for her and she got the authorship she had earned, but their collaborator’s genetic counselor was listed only in the Acknowledgements section despite her contributions to the study.

For Dawn, the thump against the glass ceiling occurred again recently when she received an email notification from a large, NIH funded, genetic disease network announcing that student trainee travel awards were being granted to their annual meeting.  Dawn wanted her genetic counseling fellow and first year genetic counseling student to attend this meeting, as they were working on relevant projects.  Sadly, a follow-up email arrived…only PhD, MD, PharmD, or other doctorate program students would qualify for travel awards.

We are genetic counselors.  That is all we ever wanted to be.  But over time, after many bumps against the ceiling, it has become clear that sometimes our Master’s degrees are holding us back.  We both considered PhD programs early on, however, we would have had to get one in a field other than genetic counseling in which we were not really interested.  Later, after having kids, buying homes, and working 40-60 hours/week, we simply could not cut down on hours or move our families in order to obtain a PhD in genetic counseling at one of the very few institutions that offer this degree.

So, it was a major transformational event when we attended an Educational Breakout Session on the Clinical Doctorate at the 2009 AEC.  Until then, we had not noticed the revolution quietly going on around us as other allied health professions were either converting to an entry-level Clinical Doctorate or adding an advanced degree Clinical Doctorate option.  This includes pharmacists (PharmD), physical therapists (DPT), audiologists (AudD), nursing (DNP), psychology (PsyD), and occupational therapists (OTD).  In fact, to our knowledge, the only allied medical profession that considered a Clinical Doctorate and decided against it are physician assistants, mainly since “both physicians and PAs practice in the domain of medicine; therefore, the entry-level doctorate for the practice of medicine is the MD or DO.”  Some of the potential pros for a Clinical Doctorate include:

  • Opportunities to advance career progression or career ladders – Of note, only 35% of genetic counselors reported being satisfied with their advancement opportunities in the 2012 National Society of Genetic Counselors Professional Status Survey,
  • Ability to obtain faculty appointments,
  • Ability to apply for grant funding
  • Ability to serve as the PI on an IRB-approved protocol
  • Increased status in the health care team
  • Address new developments – expanded knowledge base in rapidly progressing field
  • Gain ability to advance knowledge and skills in clinical practice and health care delivery

So, why not a Clinical Doctorate in Genetic Counseling – a DGC?  A specially designed, genetic counseling specific degree created for practicing genetic counselors to expand their medical and clinical research skills.  Imagine the possibility of obtaining a Clinical Doctorate through on-line, distance learning programs that can be taken in the evenings and on weekends from anywhere in the world.  Imagine getting credit toward the degree for the cases you have seen in your own practice.  Imagine courses directed at clinical-translational research.  To us, this option seems so much more accessible, affordable, and possible to do while working full-time.  We became convinced.

Originally, we thought that maybe genetic counselors should convert to an entry-level Clinical Doctorate so that we did not create a two-tiered system where some counselors had an MS and others had a DGC (To directly download a .pdf  that clarifies the distinction between entry level and advanced degree Clinical Doctorates published by the Association of Schools of Allied Health Professions, go to: http://www.asahp.org/docs/ASAHP%20re%20Clinical%20Doctorates.doc).  However, it has become clear that this would be problematic at present as some programs might have to close causing a reduction in the number of genetic counselors being trained.  In addition, it could potentially hinder licensure and reimbursement efforts.  We understand and appreciate this concern.  The last thing we want to see is a decrease in practicing genetic counselors, especially during a time when there is a great demand and need for our services.

However, this still leaves the open the possibility of the advanced degree Clinical Doctorate where those who wish to pursue the degree could do so. Just to be clear, we are not advocating for an advanced degree Clinical Doctorate instead of a PhD in genetic counseling – we are advocating for it, in addition to the PhD in genetic counseling.  We believe that there is need for both degrees as they serve different purposes and should be complementary as is the case in the nursing profession and psychology.  As to our prior concerns about a two-tiered system, we realize now that this already exists as some genetic counselors have PhDs and others do not.  In fact, this option seems to allow the most flexibility since counselors who do not want or need an advanced degree such as a Clinical Doctorate, would not need to obtain one.

So, what is the problem?  Well, it seems to us that the advanced degree Clinical Doctorate option is getting lumped in with the entry-level Clinical Doctorate and not being given due consideration.  In the survey from the Genetic Counseling Advanced Degree Task Force to the membership last month, it was difficult to respond if you support advanced degrees for genetic counselors.  The motion stated:

“A. Maintain the current standard – master’s as the sole entry-level degree/terminal degree; or

B. Move toward an entry-level clinical doctorate with elimination of the entry-level master’s degree.”

The use of the word “terminal” in option A seems to imply that there would be no opportunity for advanced degree options such as the Clinical Doctorate or PhD.  As a result, those supporting advanced degrees may have felt compelled to answer this item “B” even though they do support an entry-level Master’s degree, or to not answer at all.  In addition, the plenary session at the 2012 AEC was really focused on the entry-level CD and did not include much information about the option or impact of an advanced degree CD on the profession.

Afraid that the advanced degree Clinical Doctorate option was not being given enough consideration and that those of us who support it could not adequately convey our opinion to the Genetic Counseling Advanced Degree Task Force (GCADT) before they vote on this topic later this month, a small group of us designed a petition to offer those interested an opportunity to express their opinion:

https://www.change.org/petitions/support-an-advanced-degree-clinical-doctorate-for-genetic-counseling

Why a petition?  It seemed like the easiest way to obtain multiple signatures on a single document and much more considerate to the GCADT than an individual letter writing campaign which would have caused a barrage of e-mails or letters to members of the GCADT.  As of today, 129 individuals have signed the petition and the number continues to grow as the petition gets passed along informally from one genetic counselor to the next.  There have been many lovely responses but we’d like to share this one from a former genetic counselor in Australia:

After completing my masters at UCHSC I worked in Canada for 7 years then wanted to further my knowledge and skills. There were no advanced GC programs so instead I quit genetic counselling and returned to school to study medicine. Now a doctor, I miss genetics but will likely not return to it.

And so, as we close, we hope that the clinical doctorate, as an advanced degree, stays on the table in future discussions about advanced training for genetic counselors.  We also hope we begin to hear a new sound – the sound of us tap, tap, tapping away, trying our best to break that glass ceiling.

Heather Hampel, MS, CGC is the Associate Director of the Division of Human Genetics and Professor in the Department of Internal Medicine at The Ohio State University Comprehensive Cancer Center.  She is a former member of the Board of Directors of NSGC (Region IV Representative in 2003-4) and of ABGC (2007-2011) where she served as President in 2009 and 2010.  She received the Region IV Leadership Award from NSGC in 2006.  She works in cancer genetics and her research interests involve universal screening for Lynch syndrome.  She and Dawn Laney just met in 2012 due to their shared interest in an advanced degree Clinical Doctorate option for genetic counselors.

Dawn Laney, MS, CGC, CCRC is the Lysosomal Storage Disease Program Leader and an Instructor in the Emory University Department of Human Genetics.  She is an active member and past co-chair of the NSGC metabolic and lysosomal SIG.  Dawn has just joined the research SIG and thoroughly enjoyed attending the meeting at NSGC.  In her work life, Dawn specializes in clinical research and the lysosomal storage diseases.  She loves being a genetic counselor and finds that is entirely consistent with her long-term thirst for knowledge.  In the usual “one degree of separation” genetic counselor way, Dawn has enjoyed meeting and discussion advancement opportunities with Heather Hampel and all the other GCs pondering the topic.

Also, see a previous DNA Exchange posting about the clinical doctorate in genetic counseling.

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Corporate Sponsorship and Genetic Counseling: Questions and Suggestions

In two previous postings (Blind Spot and Are We There Yet?), I discussed my concerns regarding the potential for conflict of interest in genetic counseling. In this posting I address the complicated relationship between corporate sponsorship and the genetic counseling profession.

Let me be clear about a few matters up front. I believe that the National Society of Genetic Counselors (NSGC) is an excellent professional organization that strives to be ethical and to do the right thing for its members. I have no reason to believe that any corporation has placed undue pressure on NSGC or its members. I am not suggesting that private companies are inherently corrupt or evil.  I recognize the critical role of genetic counselors who are employed by laboratories and the importance of good laboratory medicine. I am not singling out NSGC as unique among professional medical organizations in seeking corporate sponsorship. My concerns are the potential implications of the financial relationship between genetic counselors and corporate sponsors.

To get an idea of the scope of the relationship between the genetic counseling profession and corporations, go to the publicly available section of the NSGC website and view the Sponsor and Exhibitor Prospectus, titled Partnership,  Sponsorship, and Exhibit Opportunities in 2012 (http://www.nsgc.org/Education/2012AEC/ExhibitorSponsorInformation/tabid/451/Default.aspx). This document outlines opportunities for corporate sponsorship, such as becoming an annual sponsor of NSGC, an issue of the NSGC newsletter Perspectives in Genetic Counseling, welcome receptions at the Annual Education Conference (AEC), AEC dinner seminars, and AEC Plenary and Educational Breakout Sessions, among other things.

Of course, corporate sponsorship benefits all NSGC members by reducing annual membership dues and conference registration fees, and helping NSGC carry out its duty to “promote the professional interests of genetic counselors.” I could not find information on the NSGC website about how much of the organization’s income is derived from corporate sponsors; I am guessing it is not a trivial amount.

I have two concerns about corporate sponsorship. One is the potential for intended or unintended suppression of scholarly research and presentations. For example, suppose Lab A provides $3,000 to sponsor an AEC Plenary Session, $10,000 to sponsor the AEC Exhibitor Suite Welcome Reception, and $20,000 to be an  annual NSGC Platinum Sponsor. What if a presentation proposed for that sponsored plenary session suggests that Lab A’s test is inferior to Lab B’s version of the same test? What if a speaker were critical of Lab A’s practices and policies? Would NSGC be reluctant to permit such a paper to be presented and risk losing $33,000 of support? I like to believe NSGC  and the sponsor would not suppress such presentations, but what assurances are in place to prevent this? Or, more subtly, might a researcher not even propose such a presentation for consideration to begin with, for fear of putting NSGC in an awkward position with the sponsor?

My second concern is the public perception of NSGC, an organization whose vision is “Integrating genetics and genomics to improve health for all.” Will the public believe that patients’ best interests are primary to NSGC if the organization is significantly beholden to corporations? Would public trust be further eroded if the NSGC president were employed by a company that was a significant sponsor?

So what are we to do about it? I am not wise enough to know the right answer, but options to consider are:

1)    Place no restrictions on corporate donations, with no clear-cut sponsorship guidelines or limits on the types of companies the NSGC will accept as sponsors. I think this would be a worrisome road to travel.

2)    Eliminate all corporate funding sources. I think this is unlikely to happen.

3)    Limit the amount of NSGC’s annual corporate sponsorship income such that the loss of corporate income would not threaten NSGC’s survival, and cap the amount of money that any one corporation can provide to NSGC.

4)    Limit AEC sponsorships to the Exhibitor Hall and a few other areas that do not have a direct connection to symposia, plenary sessions, and other venues for scholarly discussion.

5)    NSGC should articulate a clear and detailed policy about its relationship with corporate sponsors, something along the lines of the Council of Medical Specialty Societies Code for Interactions with Companies.  This policy should be prominently displayed on NSGC’s website and in the sponsor and exhibitor prospectus. NSGC may already have such a policy but I could not find it on the  website. The NSGC Code of Ethics addresses these issues in only the broadest terms.

6)    NSGC’s annual budget, including details of the funds derived from corporate sponsorship, should be available on the Member’s Only section of the website (it may be there now but I could not find it).

7)    Establish a standing review board, with no direct connection to NSGC or genetic counselors, to scrutinize NSGC funding sources and assure that the economic relationship between NSGC and private corporations follows widely accepted ethical principles.

8)    Take the time-honored organizational response of forming a task force to investigate the matter  and produce a formal report on the merits of the issues that I raised. The task force should include outside consultants who have no direct connection to NSGC.

9)    Ignore my concerns as the ranting of a scold who is unhappy unless he is criticizing something and hand out Bob Resta dartboards at the next AEC.

Perhaps some of these suggestions are already in place; it would be helpful to hear about them. And I would like to hear from all sides of the discussion – critics, supporters, and the confused.

Some additional thoughtful reading:

Steinman MA, Landefeld CS, Baron RB. Industry support for CME – Are we at the tipping point? NEJM 2012 366;12:1069-1071

Brody H. Clarifying conflict of interest. Amer J Bioethics 2011;11:23-8.

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