Study Name
Identification of factors that contribute to the underutilization of genetic services in rural communities experienced by primary care providers in Washington state.

This study has Baylor College of Medicine IRB approval.

Background:

You are invited to participate in this research because you are primary care provider practicing in a rural community in Washington state. Primary care providers include, but are not limited to, family practitioners, pediatricians, obstetricians/gynecologists, physician assistants, and nurse practitioners. Primary care providers are expected to be the first point of contact for patients’ concerns, and provide comprehensive care for chronic, preventative, and acute conditions (American Academy of Family Physicians). We are defining rural as a community with fewer than 50,000 people.

Purpose:

This study is aimed to identify factors that contribute to health disparities in referral rates to genetic services. The goal of this research is to aid in the larger objective of increasing access to genetic services for providers and their patients in rural Washington state.

Procedures:

This survey will take approximately 10 minutes to complete. There is minimal to no risk associated with this study. You are being asked to respond to questions regarding perceived utility of genetic services, knowledge of and perceived barriers to available genetic services, and referral decisions when faced with various clinic scenarios. You will be given the option to download and obtain information regarding the field of genetic counseling and how to refer to these services in Washington state upon the completion of the survey.

Potential Benefits:

There is no direct benefit to participants; however, you will be given the option to download information that you might find beneficial. This could provide you with information not previously known and could positively benefit you or your practice. Data from this research may also help inform the genetics community on how to better serve rural providers and their patients. You may want to participate in this research study to contribute to this potential benefit of improved access to genetic counseling services in rural communities.

Potential Risks:

There are no known risks, harms, or discomforts associated with this study beyond those encountered in normal daily life. You may choose to exit the survey at any time if you so wish; however, because of the confidential nature of this study, we be unable to remove the answers that had been submitted as they are not linked to you in any way.

Alternatives:

Your participation is voluntary. You are free to quit the survey at any time. You have the option to not participate in this study. If you decide to participate in this research, it should be because you want to volunteer. There is no penalty for not participating or for discontinuing your participation.

Cost and Payment:

If you desire, you will be entered into a drawing to win a $50 Amazon gift card upon the completion of the survey. If you want to be considered for this drawing, you will voluntarily submit your email address at the end of the survey. This email will not be linked or associated with any of the answers to the survey questions and will be kept in a confidential file. You will be notified in December 2020 if you have been randomly chosen as the winner of the drawing. The $50 Amazon gift card will be emailed to you at that time. There is no cost to you to participate in this study.

Confidentiality:

Reasonable measures will be taken to ensure confidentiality; however, this cannot be guaranteed as anytime information is collected, there is a risk of breach of confidentiality. Upon publication of any report, no identifiable information of participants will be included. Researchers will not distribute the email address you voluntarily submitted to be entered into the compensation drawing under any circumstances. Researchers intend to keep your email address until a winner has been selected and contacted for the drawing in December 2020.

Contact Information:

The researchers conducting this study include Mikaela Francisco and Tanya Eble, MS, CGC. If you have any additional questions, concerns or complaints about the study, you may contact Mikaela Francisco at mkfranci@bcm.edu or at 509-750-1609 or Tanya Eble at teble@bcm.edu or at 713-798-8321.

If the researcher cannot be reached, or if you would like to talk to someone other than the researcher about; questions, concerns or complaints regarding this study, research participant rights, or other human subjects issues, please contact Baylor College of Medicine’s Institutional Review Board at (713) 798-6970 or email irb@bcm.edu

Consent:

By checking the “I consent” box, you agree that you understand the information on this form, that you have been given the opportunity to have your questions regarding this study answered, and you voluntarily agree to participate in it.

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