email page print pageAll Topic Reviews
"Are You There Alone?""Who Could That Be at This Hour?"3 Willows4th of July99 DaysA Beautiful MindA Change in AltitudeA Corner Of The UniverseA Falling KnifeA Frog ThingA Great and Terrible BeautyA People's History of ChristianityA Question of BloodA Slight Trick of the MindA Step Toward FallingA Thousand Miles from NowhereA Tragic Kind of WonderfulA Voyage Long and StrangeA Wedding in December Abraham LincolnAcross the River and Into the TreesADHD NationAfter DarkAgainst EmpathyAgainst Medical AdviceAll the Bright PlacesAll the Way HomeAll Unquiet ThingsAlphavilleAlways Forever MaybeAlways Too Much And Never EnoughAmerica AmericaAmong the DepartedAn EducationAn Object of BeautyAnatomy of a MisfitAre You There, Vodka? It's Me, ChelseaAsymmetryBad BoyBad RatsBarbara the Slut and Other PeopleBeach RoadBeat the ReaperBeauty QueensBed of RosesBefore I DieBefore I FallBefore the FrostBig BrotherBiteBlack Elk SpeaksBlameBleed for MeBlonde FaithBlood, Salt, WaterBody SurfingBog ChildBoneMan's DaughtersBoomsdayBorder CrossingBorn Standing UpBoys Are DogsBoys Will Put You on a Pedestal (So They Can Look Up Your Skirt)Brava, ValentineBreak Through PainBreathingBridge of SighsBrief Interviews with Hideous MenBring Them HomeBrutalBy BloodC StreetCalm Beneath the WavesCanadaCellCemetery DanceChange Your Brain, Change Your LifeCheeverCinnamon KissCleopatraClose Your EyesCompulsionCross CountryCyborgasmDakotaDancing at the Shame PromDarkest FearDavid Sedaris Live at Carnegie HallDead EvenDead Little Mean GirlDear Zoe,Death Without TenureDeceptionDefending JacobDefine NormalDeliriumDevil in the DetailsDiscovering Pig MagicDisturbing GroundDivergentDivine JusticeDivisaderoDoing ItDon't Wake UpDown the Rabbit HoleDr. Andrew Weil's Mindbody ToolkitDress Your Family in Corduroy and DenimDriftlessEven Dogs in the WildEvery Exquisite ThingEvery Little Thing in the WorldEye ContactFaith, Hope, and Ivy JuneFaking NormalFalling ManFamily and Other CatastrophesFamily FirstFans of the Impossible LifeFear of the DarkFellsideField of BloodFile Under: 13 Suspicious IncidentsFiregirlFlat Lake in WinterForest of the PygmiesFortunate SonFraudFreak the MightyFree RefillsFull Steam Ahead!Furiously HappyGenerosityGenomeGetting a Good Night's SleepGetting the Love You Want Audio CompanionGiftedGirl in TranslationGod Is DeadGod Is Not OneGods and BeastsGoing BovineGood and GoneGranny Torrelli Makes SoupGraysonHappy FamilyHappy Mutant Baby PillsHarmlessHe's Just Not That Into YouHealthy AgingHeartbeatHeftHigh HeatHolidays on IceHot MilkHotel on the Corner of Bitter and SweetHotel WorldHotels of North AmericaHow a Gunman Says GoodbyeHow Full Is Your Bucket?How Successful People ThinkHow to Build a HouseHow to See Yourself As You Really AreHow to Set a Fire and WhyHunger Makes Me a Modern GirlHurt Go HappyHypnography for MenHypnography for WomenI Am I Am I AmI Am Not Joey PigzaI Can See YouI Drink for a ReasonI Feel Bad About My NeckI'd Know You AnywhereI'm Traveling AloneIdiot AmericaIf a Tree Falls at Lunch PeriodIf I StayIf You StayImagine Me GoneIn ZanesvilleInfinite JestInheritanceInnocentInside the O'BriensInvincibleInvisibleIt Takes OneJennifer, Hecate, Macbeth, William McKinley, and Me, ElizabethJust LifeKiss of Broken GlassKissing Ted Callahan (And Other Guys)Knife CreekLeaping BeautyLie to MeLies My Girlfriend Told MeLife After LifeLife InterruptedLife of PiLife StrategiesLisey's StoryLitLittle Black LiesLittle ScarletLive For Your Listening PleasureLiving Your DreamLong Shadow of Small GhostsLooking for BobowiczLosers BracketLost in the ForestLove Is a Mix TapeLove Times ThreeLove, AubreyLowboyMadappleMade for LoveMade For YouMagical ThinkingMagnificenceMaliceMan in the WoodsMarlenaMeditation in a New York MinuteMeetings with a Remarkable ManMiddlesexMind MappingMindfulness for BeginnersMirrorMaskMischlingMissing PresumedMolly Moon's Incredible Book of HypnotismMommies Who DrinkMunich AirportMy AbandonmentMy Life Among the Serial KillersMy Name Is RedMy One Hundred AdventuresMy Sister's KeeperName All the AnimalsNelson Mandela's Favorite African FolktalesNemesisNever Let Me GoNew York 2140Night FilmNina: AdolescenceNinety DaysNone of the AboveNot a Crime to Be PoorNothingNurtureShockObjects of My AffectionOdd Child OutOh My GothOlive's OceanOn Chesil BeachOne Flew Over The Cuckoo's NestOutliersPaint It BlackPanicParadise LodgeParanoiaPeace Is Every BreathPeople Who Eat DarknessPharmakonPictures of Hollis WoodsPictures of YouPilgrim at Tinker CreekPlaying with FirePlease Stop Laughing at UsPositivityPresumed InnocentPretty Girl-13Prisoner of Night and FogPuddlejumpersPunkzillaPutneyRacing the DevilReady for AnythingRebuttalReleaseRequiemRescueRevolutionary RoadRoomRun for Your LifeSay You're SorryScatSchool of FearSearching for Sylvie LeeSeason to TasteSecrets of a Passionate MarriageSee How SmallSeeds of HopeSex and SpiritSide Effects May VarySilencedSimon vs. the Homo Sapiens AgendaSinlessSix Impossible ThingsSkelligSleeping BeautySleepyheadSnowSo Brave, Young and HandsomeSolitaireSomeday This Pain Will Be Useful to YouSourlandSquirrel Seeks ChipmunkStill in LoveStill MissingStory of a GirlStress ReliefSupreme CourtshipSurviving OpheliaSwimming to ElbaSworn to SilenceSycamoreSymptoms of Being HumanTeaseTeaseTell the Truth, Shame the DevilTen Minutes to RelaxTestimonyThat Old Cape MagicThe DrifterThe Abortionist's DaughterThe AccidentalThe Accidental BillionairesThe AdultsThe Almost MoonThe Anatomy of HopeThe ArrangementThe Art of ChoosingThe Art of Exceptional LivingThe Artist of DisappearanceThe Average American MarriageThe Bastard on the Couch CDThe Beat Goes OnThe Best AwfulThe Big LoveThe Boat RockerThe Book of JoeThe Book of LiesThe Book of the DeadThe Bookshop on the ShoreThe Boy at the KeyholeThe Boy Who DaredThe Boyfriend ListThe Brass VerdictThe Breakout PrincipleThe Burden of ProofThe Case for GodThe Case of the Case of Mistaken IdentityThe Cemetery BoysThe ChemistThe Chosen OneThe ClosersThe Consciousness PlagueThe Conspiracy ClubThe Cuckoo's CallingThe Dangerous Art of Blending InThe Day I Ate Whatever I WantedThe Dead Fathers ClubThe Death of Bunny MunroThe Devotion of Suspect XThe Disreputable History of Frankie Landau-BanksThe Diviner's TaleThe DollmakerThe Dressmaker of Khair KhanaThe Dynamite RoomThe Earth, My Butt, and Other Big Round ThingsThe EndThe End of Our StoryThe Erotic EdgeThe Essential KamasutraThe Family GeneThe First Fifteen Lives of Harry AugustThe Forgotten GirlsThe Fortunate OnesThe Geography of You and MeThe Gift of an Ordinary DayThe Gingerbread GirlThe Girl in 6EThe Girl in the GardenThe Girl on Mill StreetThe Girl Who Kicked the Hornet's NestThe Girl Who Played with FireThe Girl with the Dragon TattooThe Grief of OthersThe Grim GrottoThe Guise of AnotherThe Guy Not TakenThe Heart of YogaThe Hearts of MenThe Heretic's DaughterThe Ice QueenThe Ice TwinsThe Immortal Life of Henrietta LacksThe InseparablesThe InterestingsThe Keeper of Lost CausesThe Keeper of Lost ThingsThe Kings of LondonThe Language God TalksThe Language of SecretsThe Language Of YogaThe Last ChildThe Last MileThe Last Time We Say GoodbyeThe Male BrainThe Man from BeijingThe Man in My BasementThe Man Who Couldn't EatThe Map of True PlacesThe Marriage PlotThe Memory Book The Mermaids SingingThe Ministry of Special CasesThe MuralistThe Museum of InnocenceThe Mystery of the Third LucretiaThe Myth of LazinessThe NarrowsThe Necessary Death of Lewis WinterThe New YorkersThe NewleywedsThe NixThe NursesThe Only Girl in the WorldThe Opposite of InvisibleThe Other Side of the StoryThe Outcasts of 19 Schuyler PlaceThe Particular Sadness of Lemon CakeThe PastThe Penultimate PerilThe Perfect GirlThe PostcardThe Pregnant WidowThe Promise of a LieThe PyramidThe Qi Healing KitThe Quiet RoomThe ReaderThe Republican BrainThe Rule of FourThe Rules of SurvivalThe Savage CityThe ScarecrowThe Second GirlThe Secret Life of BeesThe Secret of Lost ThingsThe Secret ScriptureThe Secret SpeechThe Secret Wisdom of the EarthThe ShallowsThe SharkThe Shock of the FallThe Silent BoyThe SisterThe Song of the Jade LilyThe Sound of Broken GlassThe SpindlersThe Story HourThe Story of Beautiful GirlThe Sudden Arrival of ViolenceThe Summer ChildrenThe Survivors ClubThe Sweet Relief of Missing ChildrenThe Sweetness at the Bottom of the PieThe Tail of Emily WindsnapThe Tenth JusticeThe Thing About JellyfishThe Third AngelThe TouristThe Treasure Map of BoysThe Trouble with Goats and SheepThe Unexpected Inheritance of Inspector ChopraThe Unfortunate Decisions of Dahlia MossThe UnquietThe Unseen WorldThe VegetarianThe View from SaturdayThe WaveThe Weed That Strings the Hangman's BagThe Weight of the NationThe Whiz Mob and the Grenadine KidThe Whole TruthThe WilloughbysThe Witch ElmThe Witch's BoyThe Wolves of AndoverThe Words We Live ByThe Wrong Side of GoodbyeThe Year of the FloodThe Year That FollowsThe Yin Yoga KitThings You Didnt SeeThirteen Reasons WhyThis Beautiful LifeThis Body of DeathThis Book Is Not Good For YouThis Full HouseThis Is HowThose GirlsThose Who Wish Me DeadTony & SusanToo Much HappinessTooth and NailTouchTransformation TriburbiaTrue BelieverTrue CompassTrust ExerciseTruth & BeautyTwinmakerTwistedTwo Can PlayTwo Little Girls in BlueUnaccustomed EarthUnder Rose-Tainted SkiesUnder the HarrowUnder the InfluenceUnder WildwoodUniversal HarvesterUnlessUnthinkingUp in the AirVacuum in the DarkVery ValentineVisits from The Drowned GirlVoid MoonWaiting for SunriseWalkingWarWatching the DarkWays to Die in GlasgowWe Are OkayWhat the Dog SawWhen My Heart Joins the ThousandWhen We Were AnimalsWhen You Are Engulfed in FlamesWhen You Reach MeWhere She WentWherever You Go, There You AreWhite HotWild AwakeWild ChildWildwoodWill They Ever Trust Us Again?Wolf in White VanWomen's Murder Club Box SetYoga SanctuaryYou Know Me WellYou Look Different in Real LifeYou Should Have KnownYou Will Know Me
Cell biology made a huge advance when it gained the ability to reproduce human cells in the laboratory at will, creating effectively an unending supply. It meant that biologists were able to explore the effects of a huge variety of conditions on human cells, and so it was enormously important for medicine. It had been a long held goal to achieve this, but it proved difficult. Eventually in 1951, at Johns Hopkins University in Baltimore, a researcher took the cells from a cancer tumor on a woman's cervix, and succeeded in getting those cells to replenish themselves. Soon, this supply of cells was being used by researchers all over the world: the cells were named HeLa. They have been used in thousands upon thousands
Most researchers did not k now where the cells came from, and did not give the question much thought. But Rebecca Skloot was inquisitive about the person from whom the cells were taken from the first times she heard about them when she was a teenager. Eventually she embarked on a project to find out about the woman. There had been various stories about her in the press over the years, but the information in them was not consistent and there was little about the woman herself. Skloot's project to find out about Henrietta Lacks took over ten years to complete while she did the research and also worked as a science journalist. She contacted the Lacks family and found that they were extremely suspicious and even hostile towards her. She eventually figured out that they had had many experiences of other white journalists asking them questions, and they had grown tired of it. Their suspicion also came from the fact that they were a poor black family with many problems including many serious illnesses, and talking to interviewers about the HeLa cells just reminded them that this tremendously important medical discovery had not helped them at all. It took a great deal of effort for Skloot to build up trust with the family, but she did it.
The central relationship of the book is between Skloot and Deborah Lacks, Henrietta's daughter. Skloot describes her efforts to get Deborah to talk to her, which required getting other members of the family to agree, which was no simple matter. There was a basic gap in culture between Skloot and the Lacks family: she was highly educated, white and agnostic, while they were poorly educated, black, and very religious. The immortality of Henrietta's cells had a very different significance for them than it did for Skloot. In her meetings with them, she makes efforts to explain more science to them, but the warmth between herself and Deborah is built on more than the science. Part of the basis of their friendship was the ethics of the story.
Henrietta never gave informed consent for her cells to be used in medical research, and certainly not for them to be used in profit making ventures. Medical business now makes millions from research on the HeLa cells, but permission has never been given for this. This is the heart of Skloot's book: the use of poor black people in medical research. Henrietta was not harmed by the research done on her cells, but nevertheless, Skloot successfully draws connections between her story and that of the Tuskegee syphilis study, where a study done on black men never fully informed them of the dangers to them. Skloot broadens the issue by also bringing in other cases of experiments done on African-American people who were living in poverty and who could hardly have understood what was being asked of them, because their medical knowledge was so lacking. But given such a history, it is no surprise that there is now a significant degree of suspicion about medical practice in the African-American community. The story is at its most moving when Skloot goes with Deborah Lacks to investigate what happened to her sister who was put in a psychiatric institute for because of her mental problems, and they discover that the doctors there conducted painful medical experiments on her without ever seeking her consent or that of her family.
So Skloot's book is about race, class, poverty, science and ethics. She gives considerable detail about the troubles of the Lacks family, which includes not only illness, but also unhappy relationships, crime and imprisonment. We get a picture not only of science, but also modern America. It is likely to provoke strong reactions in readers. These are bound to include shock at the arrogance of medical researchers who paid no attention to their patients' rights, but may also include surprise and frustration at the way that the Lacks family members seem to have a great deal of difficulty helping themselves. Skloot's tone is remarkably even-tempered, and one can't help imagining that she must have experienced moments of extreme frustration and even impatience. In subsequent interviews done since the publication of the book (one of which is at the end of the unabridged audiobook) she is eloquent in showing the family's point of view. Yet as she tells her story of her friendship with Deborah Lacks in the book, one marvels at her patience, and one wonders whether she is giving a completely full account of her own reactions. She only once loses her cool, after a very difficult few days she spent with Deborah, although she hints that there were many other less extreme instances of similarly challenging behavior.
Skloot is in a difficult position given that she had to win the trust of the family in order to get them to talk to her, since she cannot then betray that trust. But that may compromise her journalistic objectivity. This raises the question of what is her role as writer: is this a piece of science and ethics reporting or is it more a memoir of her experience and discoveries? She has discussed in some places her struggle about how much to include herself in the book, and she has good reason to be worried about this. Is this about her or Henrietta? Is she an advocate for the family? To what extent can she be dispassionate about them, and has she indeed given her readers the whole truth about them? These questions feel unresolved by the end of the book.
The Immortal Life of Henrietta Lacks would be a fine book to use in an undergraduate medical ethics course, and the hardcopy version contains a very helpful set of notes with references to related material (although this is not available in the unabridged audiobook). It raises essential issues of the balance between medical progress and the rights of human subjects in research, providing a strong historical and personal context to the story of the HeLa cells. Yet at the same time, medical ethics researchers may be hesitant in using the book in their research because of the uncertainty as to Skloot's role as a scholar. This is not to suggest there are any false or even misleading statements in the book, but there are normally clear differences between memoirs, books by activists and books by academic scholars. Skloot's approach is a mixture of all these, and this fact needs to be attended to in scholarly uses of the book.
The unabridged audiobook is performed by Cassandra Campbell with Bahni Turpin performing the African-American speakers, whose words are reproduced in the text without conversion to standard English. It's a powerful reading.
· Rebecca Skloot
· WNYC Radiolab Show on Henrietta's Tumor
© 2010 Christian Perring
Christian Perring, Professor of Philosophy, Dowling College, New York