Research Consent

Prima Nexus carry out various stages of human clinical trials, and we work with various pre-clinical research partner(s) aimed to make and support scientific discoveries and publish those discoveries in scientific journals. We invite you to take part in this project. To get started you must agree to the terms in our full consent document (below).

One of Prima Nexus's missions is to make and support meaningful scientific discoveries by enabling its customers to participate directly in research. Prima Nexus and our partners have enrolled hundreds of thousands of participants from among its customers in various bioscience research and community science projects. Specifically, we refers to research aimed at publication in peer-reviewed journals and research funded by the federal government, which has yielded over a dozen scientific articles, aims to:

  • Discover genetic factors behind diseases and traits

  • Uncover connections among diseases and traits

  • Learn about human migration and population history through genetics

  • Understand how people react to their personal genetic information

  • For further details on Prima Nexus's other uses of personal information, see our Privacy Statement.

Prima Nexus seeks your voluntary participation in our scientific discovery journey. This document explains:

  1. What you are agreeing to if you consent

  2. How you can participate

  3. How your data will be used

  4. How we protect your data and keep it private

  5. The benefits and risks of participation

  6. Your options and how to withdraw

  7. Who to contact if you have questions

1. What am I agreeing to if I consent?

Giving consent by checking the appropriate box below means that you agree to let Prima Nexus and our partners use your Genetic & Self-Reported Information for research, as described above. "Genetic & Self-Reported Information" refers to:

  • Your genetic data

  • Information you enter into surveys, forms and other features

  • Data you authorize us to import for research (if we request health information, we will ask you to review a separate Authorization form)

  • Your age and ethnicity

Self-Reported Information includes any information you submitted prior to giving consent. If you have elected to have your saliva sample stored, we may also use the results of further analysis of your sample. Your Genetic & Self-Reported Information does not include identifying Registration Information you provided when you purchased the Personal Genome Service or created an account (such as name, address, email address, user ID, password, or credit card information).


2. How do I participate?

Participation consists of (1) allowing Prima Nexus and our partners to use your Genetic & Self-Reported Information for research, and (2) entering data about yourself into Prima Nexus and/or our partner’s website. These features include surveys, individual questions, and other features where you enter information. If you do not feel comfortable providing a piece of information, you may choose not to answer that question. You may choose to take all, some, or none of the surveys.


The research study is open-ended: new surveys and features may be added on a continuing basis. If new surveys or features are added, we may invite you to complete these activities. We may also invite you to participate in a specific study if your Genetic & Self-Reported Information matches the area of interest. Such invitations will be sent using routine communication methods, such as email, push notifications or announcements when you sign in to your account.


For your participation, monetary, cash equivalents such as gift certificates or discounts on future Prima Nexus service purchases, or charitable donations may be provided as compensation for your time. Your participation in the research study is completely voluntary.

3. How will my data be used in research?

Your Genetic & Self-Reported Information may be used to discover links between genetic markers, non-genetic markers, traits, diseases, behaviors and other characteristics; to study human migrations and population history; or to assess how people respond to personal genetic information. Discoveries made as a result of this research could be used to understand the basic causes of disease, develop drugs or other treatments and/or preventive measures, or predict a person's risk of disease. The topics to be studied span a wide range of traits and conditions, from common to rare. The topics include simple traits such as hair color or freckles, serious diseases such as Parkinson's disease or diabetes, and less serious conditions such as migraine headaches or response to over-the-counter drugs. Some of these studies may be sponsored by or conducted on behalf of third parties, such as non-profit foundations, academic institutions or pharmaceutical companies.

This study may cover potentially sensitive topics such as sexual orientation, illicit drug use or other illegal behavior, or HIV/AIDS status. When we conduct studies on such sensitive topics, you will be provided additional information to help you decide whether you want to participate in research on these topics.

4. How do you keep my data protected and private (whether or not I consent)?

Prima Nexus's Privacy Statement outlines how the company protects your privacy while conducting business, such as providing our services to you. Prima Nexus uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, including your genetic data and your survey responses.

If you agree to this Consent Document, Prima Nexus and our partners can use your information in additional ways. Specifically, Prima Nexus and our partner’s researchers can use your data for research that will be published in scientific journals, or that is sponsored by the government and certain other organizations.

Just as Prima Nexus aims to minimize the chances of a privacy breach while conducting its business, Prima Nexus and our partner’s researchers aim to minimize the chances of a privacy breach while conducting research. Here are the main ways we do that:

  • The Prima Nexus and our partner’s researchers who conduct the statistical analysis do not have access to Registration Information (name, address, email address, user ID, password, or credit card) of customers

  • Prima Nexus and our partner’s researchers who interact with research participants and conduct interviews have access to names and contact information of participants, but only to very limited genetic and other personal information

  • To minimize the chance that an external person can determine that any particular customer is part of a study, Prima Nexus researchers either

  • publish only data pooled across multiple customers or

  • publish only very limited, non-identifying information of a single individual

  • All Prima Nexus employees are trained on how to work with human research participants. In addition, all Prima Nexus researchers are trained on how to conduct research responsibly.

5. What are the benefits and risks of participation?

Benefits:

One of Prima Nexus's missions is to make meaningful scientific contributions by enabling its customers to participate directly in genetic research. If Prima Nexus publishes study results in peer-reviewed journals, there may be an indirect benefit to you as scientific knowledge increases and/or new drugs or tests are developed.

You may also have the opportunity to acquire one or more of the following, in return for some level of participation in the research:

  • Comparison of your personal survey responses to those of all responders, additional information about genetics, genetic research or the Prima Nexus study, and/or preliminary research findings

  • There may be additional benefits to participation that are currently unforeseeable. Based on the results of this study, Prima Nexus may develop intellectual property, including but not limited to patents, copyrights and trademarks, and/or Prima Nexus may commercialize products or services, directly or indirectly. In such cases you will not receive any compensation.

Risks:

There are some potential risks to participating in the Prima Nexus and our partner’s research study, as described below.

  • Some survey questions or data comparisons may make you or your family members uncomfortable.

  • Your genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity, they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. In addition, if you or a family member has genetic data linked to your name or your family member's name in a public database, someone who has access to your Prima Nexus genetic data might be able to link that data to your name or your family member's name through the publicly available genetic data. Although Prima Nexus cannot provide a 100% guarantee that your data will be safe, Prima Nexus has strong policies and procedures in place to minimize the possibility of a breach.

  • When Prima Nexus and our partner’s researchers publish results from this ongoing study, they may include your Genetic & Self-Reported Information but only as part of a summary across enough people to minimize the chance that your personal information will be exposed. Identification of your individual-level data from those summaries would be extremely difficult, but it is possible that a third party that has obtained some of your genetic data could compare that partial data to the published results and infer some of your other personal information.

  • As with any online service, if you disclose your account password to others, they may be able to access your account and your Genetic & Self-Reported Information.

  • There may be additional risks to participation that are currently unforeseeable. None of the surveys or other procedures used by the researchers in the Prima Nexus and our partner’s research study is invasive or experimental. The procedures involved do not involve more than minimal risks described above.

6. Do I have any alternatives? Can I withdraw from this study?

Your alternative is not to participate in the Prima Nexus and our partner’s Research study. If you choose not to give consent for Prima Nexus and our partner’s Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement.


At any time, you may choose to change your consent status to either take part in our research or to withdraw all or some of your Genetic & Self-Reported Information from the system. Your consent status is located in the Prima Nexus "Settings" page (if you experience problems changing your consent status, write to the Human Protections Administrator at info@primanexus.com.my). If you withdraw all or some of your Genetic & Self-Reported Information, Prima Nexus will prevent that information from being used in new research initiated after 30 days from receipt of your request (it may take up to 30 days to withdraw your information after you withdraw your consent). Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn. Choosing not to give consent or withdrawing from our research will not affect your access to your Genetic Information or to the Personal Genome Service. You may also discontinue participation by closing your Personal Genome Service account, as described in the Terms of Service. Requests for account closure can be made directly within your Account Settings.


In addition, the Prima Nexus and our partner’s research study may be terminated without your consent. In the following cases, Prima Nexus will maintain your Genetic & Self-Reported Information according to the terms of our Privacy Statement.

  • Transfer of ownership. If Prima Nexus undergoes a business transition such as an acquisition or merger, the research study may be terminated. In such case, your information would remain subject to the promises made in any pre-existing Privacy Statement .

  • Termination of service. Prima Nexus may terminate your access to the Personal Genome Service for any of the reasons described in the Terms of Service . If your access to the Personal Genome Service is terminated for any of these reasons, your participation in the research study may also be terminated.


7. Who do I contact if I have questions?

If you have any questions or concerns about the Prima Nexus Research study, if you suffer a research-related injury, or if you have a question about subjects' rights, please contact the following:


Prima Nexus Human Protections Administrator

Email: info@primanexus.com.my