Introduction

The purpose of this study is to assess the extent to which genomic medicine has been integrated into the curriculum of genetic counseling training programs. The following survey includes questions assessing which topics of genomic medicine are included in the curriculum of training programs, as well as program directors’ attitudes about including genomic medicine into their programs. The survey is 13 questions and will likely take approximately 10-15 minutes to complete. Please only have ONE person from your program complete this survey.

This survey is part one of a three part research project. By completing part one (this survey) you are not obligated to complete parts two or three. Part two of the study involves a face to face or telephone interview between a representative from each program and the researcher. Part three of the study is a content analysis of educational resources used to teach genomic medicine in various training programs. Program directors who participate in either parts 2 or 3 (or both) of the study will be given a $10 Amazon gift card as compensation for their time. There is a question at the end of the survey asking whether you would be willing to participate in both parts 2 and 3 of the study.

Note: Any results from this study will be published in aggregate and will not identify any program or program director.

For the purposes of this survey, terms that are commonly used to describe concepts of interest are defined as follows:

Genomic medicine will be defined as the screening, diagnosis, counseling, and/or treatment of individual patients that is enhanced by knowledge of their genomes (i.e. GWAS/SNP results, exome sequencing, whole genome sequencing, etc.) (Boone, 2011).

Personalized medicine is the use of genomic medicine to take advantage of a molecular understanding of disease to optimize and individualize preventive health care strategies, including treatment, medication types/dosages, and/or prevention strategies that may differ from person to person. (Ginsburg and Willard, 2009)

Genomic counselingincludes providing informed consent for GWAS or genomic testing or research, understanding and interpreting genomic risk assessments (i.e. assessing risk based on SNP testing results), communicating riskas indicated by whole genome or exome testing, and helping individuals to understand and adapt to the medical and familial implications of genomic contributions to disease and personalized health care.

Question 1:

How likely is it that genetic counselors will be involved in the delivery of personalized medicine and genomic counseling in the future?

1= very likely 2 3=neutral 4 5=not likely

Question 2

What percentage of genetic counselors do you believe will be involved with genomic medicine and genomic counseling within the next 5 years?

0-5%

5-10%

10-15%

15-20%

20-50%

>50%

Question 3:

How important is it to include genomic medicine into the current curriculum of genetic counseling training programs?

1= exceedingly important 2 3=neutral 4 5=not important

Question 4

Please rank the following curricular topics in order of importance regarding preparing genetic counseling studentsto be involved with the future delivery of personalized medicine and genomic counseling (1 = the most important, 6=the least important).

Genomic technologies (i.e. NextGen sequencing)

Genome wide associate studies (GWAS)interpretation

Complex disease genetics (i.e. genetics of conditions like diabetes)

Direct-to-consumer genetic testing and interpreting SNP results (i.e. 23andMe testing)

Pharmacogenomics (i.e. genotyping of CYP2C9 and VKORC1 and Warfarin dosage)

Genomic counseling techniques/strategies (i.e. navigating the uncertainty of SNP results)

Question 5:

Please indicate whether each of the following topics is currently taught in your program, included in lectures that are under development, or will not be taught in your program in the future.

Topics / Currently taught
(Please list approximate hours) / Under Development
(Please list anticipated approximate hours) / Will not be taught
Genomic technologies
GWAS interpretation
Complex disease genetics
DTC testing and interpreting SNP results
Pharmacogenomics
Genomic counseling techniques/ strategies.
Other: ______

Question 6:

In the table below, please indicate which method(s) of instruction is/are used to expose students to each of the various content areas.(Place an “X” in each applicable box.)

Content Areas / Course lectures / Required guest lectures / Optional guest lectures / Journal Clubs / Clinical Rotations / Professional Meetings / Other:
______/ None
Genomic technologies
GWAS interpretation
Complex disease genetics
DTC genetic testing and interpreting SNP results
Pharmacogenomics
Genomic counseling techniques/strategies

Question 7:

Part A

Approximately how many people are involved in teaching topics related to genomic medicine in your program?

Part B

How many of the individuals involved in teaching about genomic medicine are not a part of the program’s core faculty?

Part C

Which of the following describes the individuals outside of your program’s core faculty who are involved in teaching about genomic medicine? Choose all that apply.

Other university faculty

Individuals who work in the genomics industry

Other

Question 8:

Do you measure the level of preparation your students have received in regards to readiness to be involved in genomic counseling when they complete your training program?

Yes

No

If yes, how do you measure the student’s level of preparation?

Question 9:

Please rank the following factors in order of the extent to which they have prevented you from incorporating more genomic medicine into your program’s curriculum. (1= most preventative factor, 7=least preventative factor, N/A= not applicable)

Lack of time in curriculum

Lack of resources and information regarding these topics

Lack of ABGC guidelines regarding these topics

Lack of available content experts (i.e. lecturers)

Unsure of where/when to incorporate these topics into the curriculum

Feeling that this is not yet ready for genetic counseling involvement or that genetic counselors will not practice in this area

Other:______

Question 10:

Please rank the following factors in order of the extent to which they have positively facilitated the inclusion of genomic medicine into your curriculum so far. (1= most positive factor ,7=least positive factor, N/A= not applicable)

Availability of content experts (i.e. lecturers)

Pressure from department/institution

Genomics facilities located at and/or near my institution

Have been provided with resources regarding these topics

Personal interest in genomic medicine

Personal belief that genomic medicine training is important

Other:______

Question 11:

Please indicate your interest in each of the following as resources to facilitate the inclusion of genomic medicine into your program’s curriculum.

Resources / Not Interested / Interested / Strongly Interested
ABGC recommendations
Slide sets
Case examples
Content outlines
Other:______

Question 12:

Part A

What best describes the location of your program within your institution?

Medical school

School of Public Health

Main University (e.g. Graduate School)

Other:______

Part B:

Which best describes your program’s home department?

Clinical genetics

Basic science genetics

Other:______

Questions 13:

We are attempting to perform a content analysis on curricular materials as part of this project, with the assurance that we will not share the materials and that we will protect the intellectual property involved. Would you be willing to share educational resources from the relevant courses in your program?

No, I am not willing to share such materials

Yes, we would be willing to share published course descriptions

Yes, we would be willing to share published course descriptions and syllabi

Yes, we would be willing to share published course descriptions, syllabi, and potentially powerpoint slides

Would you be willing to participate in an interview for this study to discuss in more depth the topics covered in this survey?

Yes

No

(If the participant answers yes, then they will be taken to another survey which will ask questions as follows….)

*Note: Your contact information will not be associated with your survey responses.

Name:

Best method of contact to schedule interview: Phone or E-mail

Phone number:

E-mail address:

Which interview option would you prefer?

A scheduled telephone interview

An in-person interview at the NSGC meeting in October