Frequently Asked Questions

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End to Endo FAQs

Can insurance companies access my medical information and/or my participation in this genetic study?

Insurance companies are not permitted access to research records, and participants do not have to tell their health insurance companies that they have participated in a research project. Research is different from clinical care. Research records are not part of a person’s medical record.


The Genetic Information Nondiscrimination Act (GINA) of 2008 is intended to prohibit the improper use of genetic information. GINA provides comprehensive protection to individuals so that they may avail themselves of genetic diagnostic tests for the advancement of their individualized medical care without the threat of discrimination from insurance companies based on their personal genetic makeup. To review the entire Genetic Information Nondiscrimination Act of 2008 and other helpful information regarding GINA, go to http://www.genome.gov/11510239.


What are the risks for me if I decide to participate?

There really are no risks. Some people may be nervous about providing a sample, but the saliva sample collection that we do is designed to be easy, private, and non-invasive. Other people may worry about having their private personal health information shared with outsiders. We guarantee each individual’s right to privacy and confidentiality. The consent forms clearly spell out all the ways we maintain privacy and confidentiality.


Will anyone else know my name?

Your name and any other personal information will be kept in locked files at our division. In the research process on your DNA sample, your name will not be attached or identifiable in any way. Your name will never be used in any public way or in a published form.


Is there any compensation for participating?

There is no tangible or monetary compensation at this time. However, with the help of women like you, the geneticists at Juneau Biosciences may discover the genetic causes of endometriosis, leading to benefits to all women in the form of improved diagnosis and treatment of this disease.


I don’t have much time. What exactly is involved?

  1. -Complete a questionnaire regarding family and health history

  2. -Submit a DNA sample in the form of saliva

  3. -Send in a release of medical records pertaining only to your gyn surgery   


What else will be expected from me?

We will need permission from you to access your medical records pertaining only to your gyn surgery. This access will be in complete compliance with the HIPAA Privacy Act. To review the entire HIPAA Privacy Act, and for information about how it applies to patients, see the Office for Civil Rights website: http://www.hhs.gov/ocr/hipaa.


Why do you need to look at my medical records?

By reviewing your medical records pertaining to endometriosis we ensure that we are comparing women with similar stages of endometriosis. For those women who do not have endometriosis, reviewing their gyn surgery confirms that they are unaffected.


What if I decide I do not want to participate after I have submitted a sample or returned the kit?

You can stop participating in this study at any time by notifying Juneau Biosciences. Juneau Biosciences will then withdraw your sample and destroy it. All other information will be destroyed in accordance to the standard established by the HIPAA Privacy Act. (Juneau Biosciences contact information is provided on the materials sent to you for your keeping.)


To review the entire HIPAA Privacy Act, and for information about how it applies to patients, see the Office for Civil Rights website: http://www.hhs.gov/ocr/hipaa.


How soon will you be able to cure this condition?

This is the very first step of a long journey towards developing a treatment for the condition.


My doctor diagnosed me with endometriosis but I have not had surgery, can I still participate?

We are currently looking for women who have had endometriosis diagnosed surgically or by laparoscopy and women who have had surgery that confirms they are unaffected.


I had endometriosis but have had a hysterectomy and so I no longer have it, can I still participate?

Yes! Your endometriosis may come and go, but your underlying DNA blueprint --- and how it contributes to endometriosis and other biological processes --- is constant. The unique genome and genes that you were born with do not change throughout your lifetime, and it is this information that we are studying. Genes are the instruction manuals for your body, and these instructions are present in every cell of your body. This is also the reason why a saliva sample is good enough for us to study --- your DNA will be in cells in your saliva. We do not require blood (such as menstrual blood) or tissue to find out what we want to know.


How do you collect a sample?

We obtain a DNA sample by using a cotton swab to collect cells from the inside of your mouth. This can be done anywhere and at any time; most likely, you will want to do it in the privacy of your home and at your convenience. The sample is returned to us in a postage-paid envelope.


Are you doing genetic testing?

We are using your DNA along with hundreds of other samples to try to detect genetic trends between women who have had endometriosis and women who have never had endometriosis. We are not going to study your sample or any sample individually. It is in the overall trend, formed from hundreds of samples, that we will see a clearer picture of what causes endometriosis.


There are approximately 25,000 genes in the human genome. We expect to find not one or two obvious "endometriosis genes," but 50-100 common genetic variations that each contribute in a small way to whether a woman gets endometriosis or not.


Will you give me the results of my genetic test?

Juneau Biosciences is not a genetic testing company. As such, we are not able to provide you with a meaningful analysis of your individual genetic profile. However, if you would like to further explore genetic testing for yourself, we can refer you to a genetic counselor to help you make these arrangements.