Taking Care Of Our Own: HR In The Age Of Genomics

By Joe Stanganelli

September 21, 2016 | Delivering a keynote address at this year's Bio-IT World Conference & Expo in April, Howard Jacob, Executive Vice President for Genomic Medicine and Chief Genomic Medicine Officer at the HudsonAlpha Institute for Biotechnology, asked his sizeable audience how many of them work for employers who pay for employee genome sequencing.  Only a single hand went up.

"Howard Jacob led a team that was the first to use DNA sequencing to identify and treat unknown disease in a patient,” George Vacek, Global Director of Life Sciences for DDN Storage, had said minutes earlier while introducing Jacob for his keynote presentation.  "So really that's the start… of patient-focused clinical genomics."

It would seem, therefore, that most life-sciences and genomics firms have yet to truly begin in this arena.

As far as their employees are concerned, who among these life-science players are putting their money where their mouths are?  While the lone, fortunate hand from Jacob's talk remains anonymous, the search has been on at Bio-IT World for those organizations who are taking the logical step of subsidizing the sequencing their own employees' genomes and the clinical interpretation thereof.

Employee-Sequencing Benefit Plans Still on the Drawing Board

The seemingly obvious solution of allowing employees with diagnoses or risks of cancer or other rare diseases the benefit of having their genomes sequenced and clinically interpreted on the company dime is still relatively nascent.  Most genomics and other life-science organizations that we asked—for-profit and not-for-profit alike—either denied having such a program or didn't reply to our inquiries.  ("Cum tacent, clamant." – Cicero, 63 B.C.)

A few others are only beginning to consider it.

"We have an Insight Genome program that is offered to employees but is not exclusive to employees; it is not a free benefit," reported Maureen Mack, HudsonAlpha's Vice President of Communications, in an email interview with Bio-IT World about HudsonAlpha's new-ish clinical sequencing, interpretation, report, and research program for rare genetic variants and pharmacogenomics. The program was launched in June 2016.  "[T]here is not at this time an employee discount, though we are in discussions [about it.]  Because our program is new, we have few employee participants at this time[.]"

Meanwhile, David Mittelman, both a partner and division president for ESA Labs, intimated to Bio-IT World that ESA Labs “will probably offer it at some point."  If so, ESA Labs wouldn't be the first company of Mittelman's to do so.  In his interview, Mittelman related details from his experience as Co-Founder and Chief Scientific Officer of Arpeggi and, later, Partner and Chief Scientific Officer at Gene by Gene (which acquired Arpeggi just over two years ago; Mittelman remained at Gene by Gene until December 2014).

"Arpeggi and Gene by Gene [offered employee-sequencing benefits because] we built tools to understand genomes—and thought it would make sense that those developers practice on their own genomic data," said Mittelman.  "While [I was] at Gene by Gene, we [also] pitched this to big companies like GE, who manage their own healthcare, and they did express interest. I think this is something that would make sense for a company that manages healthcare for their employees."

Still, there are obstacles for many in the genomics space.

"[Our company] doesn't have any kind of policy regarding our employees getting sequenced yet," Gavin Stone, Vice President of Marketing at three-year-old Edico Genome, told Bio-IT World in an email statement.  "It is something that we may consider doing in the future though since we have the ability to perform all kinds of ultra-rapid analysis on the data.  We just don't have in-house sequencing capability that an Illumina has to be able to easily offer it right now."

Stone's not-exactly-out-of-thin-air example of Illumina—which has been called "one of the most important companies in biomedicine" and hailed for "driving the genomics revolution"—is apt indeed.

"The most obvious company to do it would be Illumina as it wouldn’t cost them that much," Shawn Baker, Co-Founder and Chief Science Officer of AllSeq, told Bio-IT World.  "For anyone else the cost would be much closer to list price—a fairly pricey proposition."

The Most Obvious

Sure enough, DNA-sequencing leader Illumina is leading the way in the industry here, too; Illumina is indeed one of but a handful of life-sciences companies that presently offers sequencing benefits to employees.

"Illumina established its [employee-sequencing] program three years ago to leverage next-generation sequencing to help guide employees and their families with healthcare decisions," said Jen Carroll, Illumina's Associate Director of Public Relations, in an email interview.

The Illumina Employee Sequencing program is well established, to be sure.  Employee-benefit documentation precisely spells out for Illumina employees their eligibility for benefits and the degree of benefits for themselves and their family members. Specifically, Illumina offers three categories of sequencing and clinical interpretation benefits, each pursuant to, respectively: cancer, undiagnosed diseases, and general wellness (a.k.a. a "Predisposition Screen").  Illumina employees may avail themselves of cancer and undiagnosed-disease screening (the former offered to Illumina employees via Illumina partner Foundation Medicine's FoundationOne and FoundationOne Heme tests, which use Illumina technology; the latter offered by Illumina itself) at no cost, while being on the hook for only $1,500 out of pocket for Illumina's Predisposition Screen—which includes in-house sequencing and clinical interpretation combined with access to the resulting data via Illumina's MyGenome app.  The same goes for employees' spouses and domestic partners—except that they have to pay Foundation Medicine for any cancer screening.  Illumina extends additional eligibility for these programs to the parents, grandparents, children, and siblings of Illumina employees and their spouses or domestic partners for a potentially higher cost, depending upon the relationship to the employee and the particular category of screening.

Asked about what Illumina gets out of the deal from a business perspective—beyond positive karma for humanistic do-goodery—and how the Illumina Employee Sequencing program fits with the company's mission, vision, and bottom line, Carroll simply replied, "We believe that offering this voluntary employee benefit is in line with our mission and market position," and passed along Illumina's mission statement and market-position statement accordingly, with no further explanation.

Illumina's mission statement: "Illumina’s mission is to improve human health by unlocking the power of the genome."

Illumina's market-position statement: "Our focus on innovation has established us as the global leader in DNA sequencing and array-based technologies, serving customers in the research, clinical and applied markets. Our products are used for applications in the life sciences, oncology, reproductive health, agriculture, and other emerging segments."

Certainly Illumina making genetic sequencing and interpretation more accessible and affordable for its employees and their close family members stands to improve their health via "the power of the genome"—and, as such, may well attract and help retain better talent to ensure Illumina maintains its leading market position.

But might there be yet more genomic power that can be unlocked in this way?

Critics Allege Dark Side to Programs Like Illumina's

Some industry insiders are doubtful, however, of the true benefit of programs like Illumina's—especially where general wellness and predisposition screening is involved.

"[I have] had some pressure [at UCLA] from business people to offer wellness screening [and] sequencing, but I think it's inherently narcissistic," groused Wayne Grody, a professor of medical genetics and molecular pathology at the UCLA School of Medicine, in a presentation at last month's Next Generation Diagnostics Summit.  Grody went on to charge that wellness testing was "a rich person's endeavor" and "basically worthless" because of the complexities—and disagreement in the medical community—related to incidental findings. It goes without saying that Grody's presentation was not part of the Summit's Health and Wellness Genomic Screening Symposium.

"[We have] thus far refused to offer it," said Grody in summation.

"The truth is, without some solid ongoing analysis and reporting support, [employer-subsidized in-house sequencing and interpretation] would really be more of a gimmick," opined AllSeq's Baker more generally.  "To be truly useful, it needs to be incorporated into standard healthcare.  Don’t get me wrong: I think [that] will happen, but right now fewer than one in a hundred doctors would be capable of dealing with the info."

Mittelman, meanwhile, offered an analysis along financial lines.

"[A]n insurance company is far less incentivized to pay for genetic testing [than an employer is]," said Mittelman.  "[W]ith folks switching plans every year or two, why would an insurance company incur the upfront expense when they might not be financially responsible for later healthcare costs?  People change their companies less frequently—and so it makes more sense for a company to make this kind of investment [in-house]."

Meanwhile, one major genomics organization has taken many of the obstacles and objections to providing employee sequencing and clinical interpretation as a benefit head on.

Broadening Benefits

Because in-house technology is involved in all three of Illumina's sequencing sub-programs, no health insurance companies are implicated—helping to protect the privacy of employees and their loved ones, while allowing for a greater expanse of family eligibility than a health insurance carrier might otherwise cover.  Not every organization can—or, necessarily, should—rely completely on in-house and partner sequencing systems, however.  The Broad Institute—arguably about as much of a DNA sequencing leader in the nonprofit world as Illumina is in the for-profit world—has instead brought genetic sequencing and interpretation to its employees and their families via the more traditional route of health insurance coverage and standard co-pays.

"Last September, about a year ago, we secured an arrangement with our insurance company [Blue Cross Blue Shield] to expand our insurance coverage to include cancer genome analysis," boasted Lee McGuire, Chief Communications Officer for the Broad Institute, in an interview.  "Our health plan now provides in-network benefits for genomic tests for advanced solid tumors, rare cancers, leukemia, and cancers for which standard of care therapies have been exhausted."

Notably, these developments took root with internal employee advocacy from the ground up.  The year before she joined the Broad Institute as an environmental health and safety specialist (in 2010), Kerri Paquette was diagnosed with stage III breast cancer.  A little under two years ago, Paquette co-founded an internal employee support and advocacy group called Broadies with Cancer – which then proceeded to float the idea of an employee-sequencing program up the Broad Institute's chain of command.

"[W]ith the Broadies with Cancer group, we started talking about that as soon as [fellow co-founder Corrie Painter] and I started meeting [about] two years ago, [asking ourselves] 'How great would it be to get our own genomes sequenced?'" said Paquette in an interview with Bio-IT World.  "And then now it's actually come to fruition."

From there, Paquette and others gave input on what such a program should look like, and Broad Institute executives were more than receptive.

"Our executive leadership team saw an opportunity to support the members of our employee population who are suffering with cancer—and, beyond that, to maybe influence the broader health care system," Andy Porter, the Broad Institute's Chief People Officer, told Bio-IT World in a separate interview.  "We reached out to Blue Cross Blue Shield to ask what was involved, and as it turned out, this was something they hadn’t covered before—and it’s a fairly big process to add an element like this to a health plan.  We went back and forth for six months, until finally Blue Cross Blue Shield said, 'Okay, we’re going to do this for the first time.'  In my mind, this was a good experience, because it put something in place that hopefully no one uses, but also prompted the system to consider doing things differently."

Despite the lengthy deliberation, advocacy, and negotiations involved behind the scenes at the Broad Institute in bringing affordable genetic analysis to its employees, McGuire emphasized the obvious necessity of the move to the point of inevitability.

"Knowledge of the molecular profile of a patient’s tumor may help a physician make more informed treatment decisions and best utilize targeted therapies," said McGuire.  "Over the past decade, the Broad community has played a central role in the genomic analysis of cancer, spurr[ing] oncologists to begin to use genomic information in the clinical care of cancer patients.  This is one reason we wanted to secure it as part of our insurance plan."

Paquette—who after a dozen surgeries is cancer-free and healthy—had her own practical take.

"Early diagnosis is key," said Paquette.  "I'd say one thing I've learned is the earlier you catch cancer, the better; the easier the treatment will be, and… the easier the surgeries will be."