A Non-traditional Path Toward Neuroscience

At NYU, Carson majored in neuroscience but knew that she did not want to take the “traditional” path of medicine or academic research.

“I began exploring other opportunities that could be related to subject matter and became interested in the ethical and policy implications of neuroscience. There weren’t really courses or curriculum related to this topic at NYU, so I began looking outside of NYU.”

With every summer internship, Carson worked toward finding her niche in data, ethics, and technology. She started at the American Association for the Advancement of Science (AAAS), interning in their scientific responsibility, human rights and law program. After being exposed to the issues of science policy and the human rights implications of science accessibility, she focused her extracurricular minor at NYU on philosophy. She then went to the International Neuroethics Society.

“These experiences really introduced me to the new and pioneering discussions surrounding the ethical use of science. It afforded me the opportunity to broaden my understanding in the importance of science policy. But I realized that focusing on neuroscience would pigeonhole me, so I focused my efforts on thinking about science and data more generally.”

Exploring Careers in Data, Ethics & Technology

During her last year at NYU, Carson worked for Data-Pop Alliance, a coalition for big data and development created by the Harvard Humanitarian Initiative, MIT Media Lab, and Overseas Development Institute. With her newfound interest in data, ethics, and technology, she decided to further her studies and establish a foundation for a career in the field. So, from NYU to Duke she went.

Carson’s journey from Duke to Intel to FPF started with Information Privacy and Government Surveillance, a course taught by David Hoffman at the Duke Law School. Professor Hoffman is the Associate General Counsel and Global Privacy Officer at Intel Corporation.

“The basic approach of the class is for people to understand surveillance authorities here in the United States – how the National Security Agency and other government agencies collect surveillance information. We also want people to understand the concerns around surveillance, so we give an overview of privacy law and international data transfer. Then we bring in the private sector and their concerns for providing information to the intelligence community.” Professor Hoffman remarked.

The course helped Carson better understand privacy law and policy, which would prove to be essential to her capstone and current position. She came to see Professor Hoffman as a mentor, becoming interested in his work at Intel.

“He generously agreed to host me for my capstone project at Intel. Intel works at this interesting intersection of creating new technology and capturing data. How to deal with that data in a responsible way as they move into novel sectors like health interested me.”

Information Privacy Professional Certication

In addition to facilitating Carson’s capstone project at Intel, Professor Hoffman also encouraged that she and her classmates test for the CIPP (Certified Information Privacy Professional) credential. The CIPP is run by the International Association for Privacy Professionals (IAPP), the central professional organization for people who do privacy work.

“Taking Professor Hoffman’s course was a huge step-up in my understanding of the IAPP curriculum. The test is more application based – they give you scenarios and you apply privacy law to those scenarios. The knowledge that I gained from the CIPP is something that I use every day in my work at FPF.”

During her first week at Intel, Carson successfully obtained the CIPP, with a focus on the U.S. Private Sector. Her capstone project focused on how government entities and cloud service providers can take steps to promote use, enhance trust, and foster innovation in cloud storage technologies for medical imaging data. She was able to work with Intel’s Health and Life Sciences Imaging Group while researching issues in software liability and FDA regulation of image analysis software. She produced an extensive white paper that was published internally.

“I think the main lesson that Carson learned was how decentralized large companies can be and how much work goes into bringing different divisions together to make progress,” said Professor Hoffman, reflecting on Carson’s time at Intel. “Carson’s paper was absolutely fantastic. To get to that level of detail, she had to work with our health science data group, our sales and marketing team, the lawyers in health privacy, the public policy people… She did an amazing job.”

Transitioning to Health Data

Until Carson’s summer capstone project, Intel focused their health efforts around connected health products and organizations to help electronic health records be more effective. Carson directly contributed to Intel’s transition into the health data space.

After her capstone project, Professor Hoffman connected Carson with FPF in D.C. FPF is a non-profit think tank that brings together industry, academic consumer advocates and other thought leaders to explore challenges to technology innovation not occupied by law. FPF works with stakeholders to develop privacy protection and ethical norms to ultimately advance responsible data use. Carson’s work at FPF focuses on the privacy implications that result from new technology that track bodies, such as wearables or FitBits. She also researches companies that contribute to understanding personal health and biology, such as direct to consumer genetic testing companies.

“These companies are producing data that, unlike medical data, isn’t regulated. My role at FPF is to figure out how this data should be used responsibly. I help create best practices for these new technologies in the health sector and run the health/genetic working groups.”

Carson’s fellowship will end August 2018. She’s currently studying for the LSAT and will perhaps go to law school. She wants to eventually work for companies that are pushing boundaries in privacy ethics and data. For now, she’s making strides at FPF and will be speaking at the IAPP Global Privacy Summit. She will be speaking on the “Mobile Health App Privacy and Security is Causing a Worldwide Headache” on March 28th at 3 PM at the Washington Marriot Marquis and Walter E. Washington Convention Center.

About the Author:

Allyson Luo is a senior majoring in Public Policy. She currently works in Marketing and Communications at Science & Society.