At Stanford iGEM, we are dedicated to advancing biotechnology for the betterment of human health. As we push the boundaries of scientific discovery, we recognize the profound responsibility we carry to conduct our research with the highest ethical standards. We are taking steps to ensure that our innovations are not only effective but also equitable, environmentally sustainable, and socially responsible.

The voices and experiences of those directly affected by FSHD are central to our research. Throughout the course of our work, we have actively engaged with members of the FSHD Society to gain valuable insights and guidance on how to conduct our research in a manner that is respectful and considerate of the patient community. Every interaction and response from FSHD Society members has been carefully recorded with their explicit consent, underscoring our commitment to transparency and ethical practices. For more details on our approach to human practices, please visit our human practices page.

Informed Consent

Central to our ethical approach is the principle of informed consent. In our research, we engage directly with members of the FSHD Society to gain insights and perspectives that shape our work. Before collecting any information, we ensure that participants are fully informed about the purpose of our research, the potential risks and benefits, and how their data will be used. This process is designed to respect the autonomy of participants, allowing them to make knowledgeable decisions about their involvement. Explicit consent is obtained for all recorded responses, which are handled with the utmost care and respect.

Data Privacy and Security

Protecting the privacy of our participants is a top priority. We implement stringent measures to secure the data we collect, including encryption, anonymization, and secure storage protocols. Access to sensitive information is strictly limited to authorized team members, and data is retained only for as long as necessary to fulfill the objectives of our research. We are committed to transparency in how data is shared and used, ensuring that participants’ rights are safeguarded at all times.

At Stanford iGEM, we are committed to conducting our research in an environmentally responsible manner. Our approach to waste management is a key aspect of this commitment:

• (1) Living Waste: Biological materials, such as HEK293T, C2C12, and DH5-Alpha cells, are handled with care to prevent environmental contamination. We sterilize and kill all living waste before disposal, adhering to strict biosafety protocols.
  
• (2) Non-Living Waste: Disposable materials, including gloves, pipette tips, and Falcon tubes, are essential in our laboratory work. We actively seek to minimize our environmental footprint by recycling all recyclable materials, thereby reducing the amount of waste that ends up in landfills. Our commitment to sustainability extends to every aspect of our research, ensuring that our scientific pursuits do not come at the expense of the environment.

We believe that the benefits of our research should be accessible to all, regardless of socioeconomic status. Our engagement with the FSHD community has reinforced the importance of making potential treatments affordable and widely available. We are exploring various methods of delivering genetic therapy, including cell therapy and Adeno-Associated Virus (AAV). While we recognize that cell therapy may be more costly, we are actively investigating ways to reduce costs, ensuring that our treatment is within reach for all patients who need it. Equity in access is a fundamental principle guiding our work.

We adhere to all relevant state and national guidelines, as well as institutional protocols, to ensure that our research is conducted responsibly. Regular consultations with ethics boards and participation in ethics workshops are part of our commitment to maintaining the highest standards of ethical conduct. We are dedicated to continuously improving our practices as new ethical challenges emerge.

Our research has the potential to impact not only individuals with FSHD but also society at large. We are mindful of the broader social implications of developing a novel treatment and are committed to ensuring that the benefits of our work are distributed equitably. This includes considering the long-term effects on healthcare systems, patient communities, and societal attitudes toward genetic therapies.

Engaging with the public is a key component of our ethical approach. We strive to raise awareness and foster understanding of FSHD, genetic therapies, and the ethical considerations involved in our research. Through outreach activities, public talks, and educational materials, we aim to promote informed public discourse and build trust in our work.
One of the initiatives we took part of was the writing of the Ethics Handbook, and iniative by Queen's iGEM Team. We collaborated writing part of the implications and possible applications of bioethics in education, and we are glad we got to collaborate with such an amazing group of individuals.

For more details on our approach to educational outreach efforts, please visit our Educational Outreach page.

As science evolves, so do ethical standards. We are committed to staying informed about emerging ethical issues and adapting our practices accordingly. This includes continuous education, participation in ethics workshops, and ongoing consultations with ethics boards. Our goal is to ensure that our research remains ethically sound as it progresses.

Scalability and Global Access

As our research moves closer to clinical application, we are considering the ethical implications of scaling up our treatment. Ensuring that our treatment remains affordable and accessible on a global scale is a significant challenge, particularly in low-resource settings. We are exploring strategies to navigate these challenges ethically, including partnerships with organizations dedicated to improving global healthcare access.