2012 Panel Discussion - Questions and Answers

Personal Genomics

Which do you think will be a greater challenge to incorporating personal genomics into medical practice, lack of genetics knowledge among patients or among doctors?  What should be done to educate both these groups about genomics?

We keep hearing about individualized medicine - What’s taking so long and will there ever be individualized medicine?

What is the biggest obstacle standing in the way of clinical applications of genomics?  How do we bring genomic applications to the clinical world?

For which diseases are you most optimistic for the prospects of genetic/genomic/proteomic-based diagnosis?

Eventually there will be a "tipping point" where whole-genome sequencing becomes cheap enough that nearly everyone in the US will get sequenced. What do you think the likely social and research effects of this "tipping point" will be?

For James Evans:
Will we be seeing clinical treatments or diagnosis based on genomics that will help to decrease healthcare costs in the new decade?

A question regarding Genetics & Clinical Medicine:  Have services like “23 and me”, and online genetic testing service, had any impact on patient care – if not, do you expect they will?

What is the future of phenotyping people and can we use social media?

With current technology, how do we link genome sequencing to gene therapy?

What should we do about partial genome testing?  Example, current DNA tests for drug interactions and dosage.

As the nascent paradigm of “P4 Medicine” (predictive, preventive, personalized, and participatory) emerges and matures, how will the role of, and the need for, physicians change?  Will they perhaps go the way of scribes in the wake of the printing press?

 

Genomic Screening (Eugenics, Insurance, Privacy)

How long until newborn screening by whole-genome sequencing becomes (1) available, (2) routine, and (3) useful?

If we could sequence every embryo before implantation, would that be a good thing?

Can personal genome sequencing and health insurance co-exist?

Where should we draw the ethical bounds of exploring genomic techniques?  Should people be allowed to genetically modify their children during fertilization to eliminate genetic predisposition for disease?  What about GM your kids to be stronger, smarter, faster?

Given that genomic data would be so large that it must reside on computers, and that computer systems are vulnerable to security breaches, how can privacy concerns be adequately protected for any progress to be made?  If the genetic sequences of everyone on earth were known today, what changes or improvements would be possible (1) immediately; (2) in 5 years; (3) in 20 years?

With medical treatments and fertility medicine, what are the current selective pressures on the human genome?  Is the prevalence of deleterious mutations increasing?  If so, what should we do about it?

Do you think the American public tends more towards the dystopian/genetic determinism side or utopian/personal medicine/no disease model?  Do you think one viewpoint is more harmful to society, especially marginalized groups?

The people who said “yes” to knowing about a fatal gene were young – perhaps they want to plan to have or not to have children.  The people who said “no” were older – perhaps they want to protect their own hearts from fearing for their children.  This future belongs to the young?

When will an understanding of our genome reveal our personality disorders, and how can we protect our privacy on this matter?

 

Education

How should genetics and genomics be taught in the classroom?  K-12?  College?

To Bruce Alberts:
We do not have an informed electorate regarding science and other issues.  You have been pro-active in introducing principles of science (“What is The Evidence?”) at the earliest levels of elementary school.  What progress has been made towards this goal?

How could the educational system better prepare students for careers in genome sciences?

Bruce:  Do you think an understanding of the history of scientific development would be helpful to graduate students?

 

Communication and Public Outreach

Has the genome sciences community overstepped the promises made to the public regarding personal genomics and health?  (What is a reasonable expectation the public should have of the impact that genome sciences have on their lives.  A REASONABLE expectation - not "10 years from now every baby will have his or her genome sequenced!"  I don't think that's reasonable or even on the table, but it's what some of us tout.)

Based on your experience interacting with the public, how do you think genome scientists can improve at communicating their goals and research?

Please integrate these questions on the role of scientists and journalists in communicating genomic discoveries.

In a society where few non-scientists understand why devoting federal funds to fruit-fly research is important, I’m pleased you’ve included Natalie in the panel because it seems that scientists and science writers have a huge task to try to explain genetics to the general public.  Are scientists being encouraged to become better writers and science communicators?  (There is not much funding for science education, etc.).

In selling the project to the public and congress, do you think the human genome project over-emphasized the prospect of medical benefits of sequencing the human genome over the basic science benefits?  Which (medical or basic science) should be emphasized moving forward?

How do we educate the public accurately on the state of advances of genome sciences?

Would the panel talk about the anti-science movement?  On Friday, Chris Mooney will be in Seattle talking about why people mistrust.  Does this political reality and budget cutting threaten the momentum that Keith Yamamoto described?

Do you think science is more or less respected now than 2, 5, 10, 20, 50, 100 years ago?  (dystopia or utopia?)

The Eichler Lab today published a paper on a gene involved in human evolution.  On the UW website, where this finding was reported, the first two responses were from creationists who were offended.  How can we use genomics to broaden public understanding of evolution?

Impact of Genomics Globally

What is the place for genetics and genomics in the developing world -- or the poorer population in the US?  How can we make genetics and genomics accessible in places without access to lots of expensive equipment?  What problems might the field of genetics/genomics address that would be most relevant to the developing world?

Please comment on how the advances in medicine related to the human genome will affect longevity and world population, food supply, and resource demands.

Would you please address the global politics of the human genome?

How many different human genomes must be sequenced to have a significant impact on disease and/or population control?


Genomic Technologies and Focus


What non-medical uses do you foresee for genomic science and genomic information?

Genetically modified food remains a controversial and poorly understood issue.  Intellectual property, allergy, and ethical concerns have all been raised.  What do you see for the future of this field?

How far are we from creating an organism – likely a microorganism – with a fully designed genome?

Large sums of public money have gone into GWAS and now exome/genome sequencing in search of causes of common diseases.  Is it, has it, been well spent?

The inability to predict phenotype from genotype seems to be a persisting weakness in genomics.  In light of this fact, do you predict a shift away from broad, genome-wide research back to focused, hypothesis-driven research?

The last era was Genetics – the next is Environment. Please comment.

What role does synthetic biology /genetic engineering have for preserving biodiversity in the present/future?

Given its complexity and heterogeneity, is cancer a useful focus of genomics?

What role will the crowd play in the future of genome science, with tools like Foldit, Galaxy Zoo, Big Data, Problems, etc.?  Will crowd-sourcing solve problems, especially in enabling new understanding by crowd funding new projects, as the barrier to entry decreases and technological power increases?

As genomics leads to understanding complex human disease (if it does), will there be an important role for systems biology?

Where do you see Genome Science 5 years from now?

Regarding moving from data/description to actual understanding as mentioned in the introductions: What direction in genomic sciences do you think are most promising or will you be following?

As the nascent paradigm of “P4 Medicine” (predictive, preventive, personalized, and participatory) emerges and matures, how will the role of, and the need for, physicians change?  Will they perhaps go the way of scribes in the wake of the printing press?

 

Career Advice

What advice do you have for young people pursuing genetic sciences, and what advancements do you think the next generation can achieve?

Imagine you were able to start over and begin your career as a scientist today.  What would you work on?

How do we reduce the period of unemployment, training, or whatever so PhDs get their first job before age 38 and their first NIH grant before age 42?

Should genome scientists receive training in morality or ethics?

 

Human Evolution

When will the changes in the genome that occur over a lifetime be characterized?

What will humans look like in 3 million years?  Where is our evolution heading?

But how will we recognize the next human species?

 

Wrap up

Can each of you take a final few minutes to tell us where you think genome sciences, its research and clinical uses, will be in 5 years?  10 years?