Considerations of ethics for synthetic biology

A major topic for this week, and for the field of synthetic biology is ethics and the implications of the DIY bio. As tools become readily availiable, enabling civilians to preform labs that used to be inaccessible outside of large institutions adaptions to regulation and policy change need to be considered. We were asked to consider one ethical question and propose a possible regulatory solutions.

Goal & Rationale:

Ensure children receive medical care under the supervision of a trained medical professional. Protect their genetic data until they reach an age of consent.

The issue: “At home” mis-diagnosis of children and medical mis-treatment.

Though it is advantageous to be aware of your own health, technologies are expanding beyond Google search, temperature and blood pressure reading to allow more acute self-diagnosis such as at home blood tests, gene analysis and cell cultures. In many ways this will be beneficial to society as it will de-burden the health care system and hopefully allow better, more affordable wider spread care, however mis-information and mis-diagnosis may become more prevalent. This is particularly concerning for children who do not have their own agency or voice.

Examples being: If a child tests positively for a genetic pre-disposition, or merely expresses certain random genes, gradians my try to self-treat the child where medical professionals would not. The current measles outbreak in Washington state is an example of parents disregarding professional advise based on mis-information, to the detriment of their children's health.

“Parents may be free to become martyrs themselves. But it does not follow that they are free, in identical circumstances, to make martyrs of their children.” – p170 Prince v. Massachusetts

Design & Requirements:

Free speech is the First Amendment to the Constitution of the United States, and though this right must be preserved, when faulty information is actively harming citizens an effort to counter and educate the population must be undertaken. Though there is concern that emerging technologies themselves could provide false diagnosis the FDA is established to regulate this. Examples, such as Theranos, show the downfall of dishonest technology claims and the ensuing legal repercussions. However, no known repercussions exist for propagating faulty information based on a genuine diagnostic.

In order to protect children, I propose regulating DNA sequencing of minors, only allowing their data to go to licensed medical professionals. Inspired by regulation around the tobacco industry, similar limitations could be placed self-diagnostic and self-treatment technologies.

“Neither 23andMe nor any of its Services are designed for, intended to attract, or directed toward children under the age of 18. A parent or guardian, however, may collect a saliva sample from, create an account for, and provide information related to, his or her child who is under the age of 18.” – 23andMe

Assumptions & Risks of “Success”

  • There is a risk of limiting free speech by regulating marketing.
  • An assumption in proposing this regulation is that trained medical professionals can provide better care than at home devices. It is assumed that trained medical professionals are geographically available and it is accessible and affordable for guardians to make appointments with them and their children. (I know this is not always the case.)
  • Limiting parental rights and freedom to direct and decide what is best for their children is a BIG ethical consideration.
  • Reducing the ability for gradians to diagnose and treat children at home could limit the minors care.