HD Genetics Privacy Policy

Notice of Privacy Practices for

HD Genetics, LLC

Update June 18, 2024

Notice of Privacy Practices for HD Genetics, LLC

This notice describes how medical information about you may be used and disclosed and how you can get access to this information. Please review it carefully.

This Notice of Privacy Practices outlines your rights and choices and your healthcare providers’ responsibilities under HIPAA. It also provides you with specifics about Privacy Practices at HD Genetics.

HD Genetics was created specifically to help and support the Huntington’s disease community. We understand how important privacy is when relating to genetic results. Our privacy policy is meant to be very transparent so you understand possible outcomes of your personal data.

If you have any questions, concerns, ideas for improvement or special requests regarding this notice, please contact:

HD Genetics, LLC

[email protected] (877) – HD-GENE-X or (877) 434-3639

YOUR RIGHTS

When it comes to your health information, you have certain rights. This section explains your rights and some of our responsibilities to help you.

You can get an electronic or paper copy of your call notes created by the HD Genetics team. These notes are a summary of the intake call, genetic counseling session and any other interaction HD Genetics has with you. These notes are never shared with anyone outside of the HD Genetics team, unless you provide us written consent.

We will provide a copy of your genetic test results from our partner laboratory, Prevention Genetics, right after your results session with our genetic counselor. This test report will be sent to you via email to your provided email. If you would like to provide another email or an alternative option for receiving your results, please let us know.

If you would like an additional copy of your results at any point, please contact the HD Genetics team with your request and this can be sent to you.

Ask us to correct your medical record

You can ask us to correct health information about you that you think is incorrect or incomplete. Ask us how to do this.

We may say “no” to your request, but we’ll tell you why in writing within 60 days.

At HD Genetics, most of the information we have about you will have been self-reported. Any corrections or additional information may be important for risk assessment and you are encouraged to report this information.

Request confidential communications

You can ask us to contact you in a specific way (for example, home or office phone, personal email) or to send mail to a different address.

We will say “yes” to all reasonable requests.

At HD Genetics, we communicate with you via text, email, or phone call depending on your preference. Typically, we will text the individual to schedule a phone call to go over intake survey details that they submitted through our website and to ask a few additional questions. At the end of that phone call, we will schedule a video call for genetic counseling. By submitting an intake survey submission including your contact information, you consent to contact from the HD Genetics team via text, phone call, and email to the contact information you provide.

No mobile information will be shared with third parties/affiliates for marketing/promotional purposes. All other categories exclude text messaging originator opt-in data and consent; this information will not be shared with any third parties

You can ask us not to use or share certain health information for treatment, payment, or our operations. We are not required to agree to your request, and we may say “no” if it would affect your care.

At HD Genetics, we do not accept insurance. All services are paid out-of-pocket in full, so we do not proactively share information with your insurer or any other third party outside of the HD Genetics team and partner laboratory. Be advised that if you do submit a receipt to your insurer for possible reimbursement, your insurer may ask us for additional information.

Upon your request and with your consent, we will share your information with third party partners that may include patient advocacy organizations, clinical trial coordinators, clinical care centers or other third parties that would be providing support to you. We would only be sharing your information if it’s a service that you’ve requested more information about. We do not share your name or contact information without your permission.

Get a list of those with whom we’ve shared information

You can ask for a list of the times we’ve shared your health information for two years prior to the date you ask, who we shared it with, and why.

We will include all the disclosures except for those about treatment, payment, and health care operations, and certain other disclosures (such as any you asked us to make). We’ll provide one accounting a year for free but will charge a reasonable, cost-based fee if you ask for another one within 12 months.

HD Genetics is a privately owned LLC and is not affiliated with any medical centers. We will not sell your contact information or use it for marketing or fundraising purposes. A copy of your genetic results &/or call notes following any sessions is sent only to you.

Get a copy of this privacy notice

You can ask for a paper copy of this notice at any time, even if you have agreed to receive the notice electronically. We will provide you with a paper copy promptly. At HD Genetics, this notice is available on our website. Upon request, we can also send via email or mail you a paper copy.

File a complaint if you feel your rights are violated

You can complain if you feel we have violated your rights by contacting us:

HD Genetics, LLC

[email protected] (877) – HD-GENE-X or (877) 434-3639

You can file a complaint with the U.S. Department of Health and Human Services Office for Civil Rights by sending a letter to 200 Independence Avenue, S.W., Washington, D.C. 2020, calling 1-877-696-6775, emailing [email protected], or visiting www.hhs.gov/ocr/privacy/hipaa/complaints/.

We will not retaliate against you for filing a complaint.

OUR USES AND DISCLOSURES

How do we typically use or share your health information?

We typically use or share your health information in the following ways:

To inform your genetic counseling
With our partner laboratory to order a test
Upon your request, we can use your health information and share it with other professionals who are treating you. Example: A doctor treating you asks for a copy of your genetic results and you request us to send them the information.

HD Genetics, LLC is a privately owned LLC and is not part of or affiliated with any medical center. Although in many cases, you will be encouraged to share the information discussed and a copy of your consult note with your primary care provider or other healthcare providers, the responsibility of sharing or not sharing this information lies with you. If you do choose to share a copy of your genetics consult with your healthcare provider/s, and your healthcare provider reaches out to HD Genetics for discussion or consultation, we will be happy to speak with them if you have given your written permission for us to do so. Sharing a copy of your consult note with your healthcare provider will also be considered authorization to discuss with your healthcare provider.

HD Genetics will not share with any third party your personal and family health history or any genetic testing reports without your written permission. Exceptions to this would be if we were compelled to do so by federal or state laws or regulations; if you were not available to give consent (ex. if you were unconscious) and sharing the information could be important for your treatment; and upon your death, in which case your information may be shared with a medical examiner.

RUN OUR ORGANIZATION

We can use and share your health information to run our practice, improve your care, and contact you when necessary.

Example: We use health information about you to manage your genetic testing experience and provide you with any guidance after testing to make sure you get connected to the best resources and programs.

BILL FOR YOUR SERVICES

At HD Genetics, your personal information may be used for payment (credit card company). This information is not stored by HD Genetics. We also allow you to mail in a money order to pay for services if you don’t want to use a credit card. You can mail in a money order. Please ask us for the proper address to mail in your payment.

We do not accept insurance. We do not ask you for your health insurance information. We will never share anything with your insurance provider unless you instruct us to do so. If you choose to submit a receipt to your insurer for reimbursement, HD Genetics may be subsequently contacted by your insurer to supply additional information for purposes of reimbursement to you or coverage of related health services.

HOW ELSE CAN WE SHARE YOUR INFORMATION?

We are allowed or required to share your information in other ways – usually in ways that contribute to the public good, such as public health and research. We have to meet many conditions in the law before we can share your information for these purposes. For more information see: www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html.

Help with public health and safety issues

We can share health information about you for certain situations such as:

Reporting suspected abuse, neglect, or domestic violence

Preventing or reducing a serious threat to anyone’s health or safety

Performing research for purpose of publication or presentation to advance scientific knowledge or better our practices

We can use or share your information for health research, such as to inform where to establish clinical trial sites.

Comply with the law

We will share information about you if state or federal laws require it, including with the Department of Health and Human Services if it wants to see that we’re complying with federal privacy law.

Respond to organ and tissue donation requests

We can share health information about you with organ procurement organizations.

Work with a medical examiner or funeral director

We can share health information with a coroner, medical examiner, or funeral director when an individual dies.

At HD Genetics, upon your death, your information, including any genetic testing results, may be shared with a medical examiner. Genetic testing results in these situations can be important for related diagnoses of family members.

We can use or share health information about you:

For law enforcement purposes or with a law enforcement official

Respond to lawsuits and legal actions

We can share health information about you in response to a court or administrative order, or in response to a subpoena.

OUR RESPONSIBILITIES

We are required by law to maintain the privacy and security of your protected health information.

We will let you know promptly if a breach occurs that may have compromised the privacy or security of your information.

We must follow the duties and privacy practices described in this notice and give you a copy of it.

We will not use or share your information other than as described here unless you tell us we can in writing. If you tell us we can, you may change your mind at any time. Let us know in writing if you change your mind.

For more information see: www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/noticepp.html.

Changes to the Terms of this Notice

We can change the terms of this notice, and the changes will apply to all information we have about you. The new notice will be available on our web site.

By using HD Genetics’ website and/or counseling or consulting services, you agree to be bound by the following Terms of Service. Please read them carefully.

HD Genetics, LLC provides genetic counseling and consulting services, consistent with a genetic counselor’s scope of practice as defined by the National Society of Genetic Counselors (NSGC) and the American Board of Genetic Counseling (ABGC). HD Genetics does not provide medical advice. No content on the site, no consultation note, and no discussion by way of phone, videoconferencing, electronic communication, or any other manner is intended for medical diagnosis or treatment, nor should any information provided through genetic counseling services be taken as a reason to disregard any previously given medical diagnoses or medical advice. Always seek the advice of your physician or a qualified healthcare professional with any questions you may have regarding any medical condition. If you need help locating a qualified HD healthcare professional, please ask the HD Genetics team and we will do our best to connect you.

Use of HD Genetics’ services requires the sharing of PHI (protected health information), including but not limited to name, date of birth, email, telephone number, and credit card. By using this site and/or HD Genetics’ Services, you acknowledge that you have reviewed our Notice of Privacy Practices, that you understand and accept that despite reasonable security measures, the security of your information can never be completely guaranteed.

Accurate Self-Representation

In using this website and HD Genetics’ Services, you agree not to misrepresent yourself. You agree not to knowingly misrepresent your personal and family health history. You also agree not to share any confidential information about a person other than yourself unless you are authorized to do so. This includes but is not limited to copies of relatives’ genetic testing reports and other medical records.

You also agree not to misrepresent your state of residence and/or the place of service of your telegenetic counseling appointment. In receiving telegenetic counseling services through HD Genetics you assert that you are located at the time of the appointment in a state in which either a) there is no licensing requirement for genetic counselors at the time of the appointment, or b) the genetic counselor providing you with genetic counseling services holds a license from the state in question, as indicated on the HD Genetics website.

This is the end of the HD Genetics Privacy Policy